GERBERA D ORO 2017 XVI GIORNATA NAZIONALE DEL SOLLIEVO 28 MAGGIO 2017

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1 GERBERA D ORO 2017 XVI GIORNATA NAZIONALE DEL SOLLIEVO 28 MAGGIO 2017 Premio Gerbera d oro, offerto dalla Fondazione Nazionale Gigi Ghirotti e dalla Conferenza delle Regioni e delle Province autonome ad una struttura sanitaria che si sia distinta per il buon funzionamento dei servizi alla persona in tema di terapia al dolore il progetto vincitore i progetti "menzionati" "piccoli, ma belli", progetti minori selezionati dalla Commissione di valutazione Il Dossier contenente tutti i progetti che hanno partecipato all'edizione 2017 "Gerbèra d'oro" può essere consultato sul sito sezione Sanità

2 FONDAZIONE NAZIONALE GIGI GHIROTTI CONFERENZA DELLE REGIONI E DELLE PROVINCE AUTONOME XVI GIORNATA NAZIONALE DEL SOLLIEVO 2017 Premio Gerbèra d oro 2017 A decorrere dall anno 2006 è stato istituito il premio Gerbèra d oro che la Conferenza delle Regioni e delle Province autonome assegna come riconoscimento ad una struttura sanitaria nazionale che, muovendo dalla considerazione della centralità della persona malata, si sia distinta nel sollievo dal dolore e nell affrancamento dalle sofferenze inutili, non solo attraverso le terapie più avanzate, ma anche con il sostegno psicologico e la capacità di rapportarsi umanamente. Una Commissione mista formata dalle Regioni Piemonte, Veneto, Umbria, Emilia-Romagna, Toscana, Lombardia, Puglia dalla Segreteria della Conferenza delle Regioni e delle Province autonome e dalla Fondazione Nazionale Gigi Ghirotti seleziona ogni anno i progetti pervenuti, accompagnati da documentata motivazione, individuando le strutture meritevoli di ricevere il premio. La premiazione avviene in occasione della Conferenza di presentazione della Giornata Nazionale del Sollievo (presso l Auditorium del Ministero della Salute ) con la partecipazione del Ministro della Salute, il Ministro per gli Affari regionali, il Presidente della Fondazione Gigi Ghirotti ed un rappresentante della Conferenza delle Regioni e delle Province autonome. Ai fini della valutazione, i progetti già in corso sul territorio dovranno caratterizzarsi per: l innovazione; l originalità nonché l esportabilità in altri contesti; i risultati raggiunti in termini di rapporto costi/benefici alla persona sofferente; gli aspetti di umanizzazione e di coinvolgimento di chi presta le cure;

3 Progetto vincitore Premio Gerbèra d oro 2017 Regione Lombardia Struttura: ASST Grande Ospedale Metropolitano Niguarda titolo del progetto Rete terapia del dolore (RED) - Milano

4 Regione Lombardia Scheda: #14 - Lombardia Nome Struttura: Regione: ASST Grande Ospedale Metropolitano Niguarda Lombardia Indirizzo: Piazza Ospedale Maggiore, 3 Sito di Riferimento: Resp. Struttura: Assess. proponente: Titolo del Progetto: Paolo Notaro Assessorato Welfare Regione Lombardia RETE TERAPIA DEL DOLORE (RED) - MILANO Data: 23/03/ /01/2017 Descrizione/Obiettivi: L offerta di cura al paziente con dolore è caratterizzata da un'elevata frammentazione, inappropriatezza e difficoltà di accesso alle adeguate cure specialistiche. La creazione e implementazione della rete è archetipo fondamentale per garantire la continuità assistenziale e la relazione con tutti gli erogatori multi specialistici territoriali e ospedalieri. Il ruolo primario nella gestione dei pazienti con dolore cronico è sicuramente riservato ai medici di medicina generale che offrono una prima risposta alle esigenze di cura, intervengono sul dolore e indirizzano il paziente complesso ai centri specialistici di terapia del dolore. Nel 2015 Niguarda, dopo essere stato identificato come centro di terapia del dolore di secondo livello, assume un ruolo centrale nelle azioni per la costruzione di una rete di centri specialistici finalizzata a intercettare i pazienti inviati dai MMG. A partire da un analisi preliminare dei bisogni, condotta su MMG del territorio milanese, è emersa la difficoltà di orientamento nel sistema di offerta. In secondo luogo sono stati contattati tutti i centri erogatori di terapia del dolore del territorio milanese con la richiesta di descrivere la propria offerta algologica. A tutti i rispondenti è stato chiesto di entrare a far parte della futura rete del dolore milanese ponendo come condizioni per l accesso: la mappatura dei propri servizi secondo una tassonomia standardizzata, l utilizzo del logo della rete sul proprio sito web, la disponibilità di slot riservati al contatto diretto con il MMG di Milano. Nove strutture ospedaliere hanno aderito al progetto ed è stata redatta una carta dei servizi della Rete della Terapia del Dolore di Milano (RED-Milano), che è stata condivisa con ATS Milano e successivamente inviata ai MMG. Nella carta dei servizi MMG per ciascun centro di RED sono presenti informazioni, contatti e una mappatura sintetica delle patologie trattate, delle tecniche adottate e dei setting di erogazione. Tutte le informazioni su RED Milano sono consultabili, anche dai cittadini, sul sito dove è visibile il logo che accompagna graficamente la rete. Tale logo è stato realizzato attraverso un concorso di idee indetto presso le classi dell ultimo triennio delle scuole medie superiori del territorio di Milano. Esso rappresenta lo stato di frammentazione che vive un paziente con dolore cronico, sia in termini di effetti della patologia che di accesso alle informazioni, e che va via via ricomponendosi riprendendo ordine e forma. Il tutto con le tinte del codice colore del triage. Obiettivi: RED Milano ha come obiettivi: 1. informazione ai cittadini e orientamento degli operatori sui servizi di terapia del dolore 2. la presa in carico specialistica e organica dei pazienti affetti da dolore cronico complessi e refrattari ai trattamenti. 3. l'accesso tempestivo alle cure appropriate algologiche 4. la riduzione della frammentazione dei servizi e miglioramento della continuità dei percorsi di assistenza e cura. 5. il miglioramento della qualità di trattamento dei malati da parte dei MMG e di appropriatezza di invio alle cure specialistiche. Risultati: Da gennaio 2017 RED è la Rete Terapia del Dolore Milano che unisce 9 ospedali dell'area metropolitana per una risposta tempestiva contro il dolore-ribelle. Insieme alla ASST Grande Ospedale Metropolitano Niguarda che ha una funzione di coordinamento, fanno parte della rete la ASST Fatebenefratelli-Sacco, la ASST Pini-CTO, l'asst Nord Milano, la ASST Santi Paolo e Carlo, la Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Fondazione IRCCS Istituto Nazionale dei Tumori, l'istituto Clinico Città Studi e lo IEO (Istituto Europeo di Oncologia) - Allegati: #14 - Dalla malattia dolore alla cura_mmg.pdf 22

5 Salute OK Dalla malattia dolore alla cura Medici di medicina generale e specialisti insieme nella cura del dolore cronico Milano, dicembre 2016

6 Il dolore: un segnale di allarme La funzione del dolore è direttamente legata alla necessità di segnalare la presenza di una lesione o un alterazione in atto nell organismo. Nella maggior parte dei casi rappresenta, quindi, il campanello d allarme di un danno che l organismo sta per subire e consente di attuare dei meccanismi fisiologici di difesa. Ma quando il dolore continua nel tempo, pur essendo guarita la patologia iniziale, esaurisce la sua funzione di sintomo utile diventando esso stesso una vera e propria malattia. Lorem ipsum dolor sit amet, consectetur Numerose sono le patologie che possono adipiscing essere elit, causa sed do scatenante iniziale di un dolore cronico, le più frequenti eiusmod sono: tempor osteoartrite, artrite reumatoide, fibromialgia, lombalgia cronica, incididunt cefalea, ut labore emicrania, et algie dolore magna aliqua. Ut facciali atipiche, radicolopatia, dolore neuropatico dei nervi periferici e enim ad minim veniam, centrali, dolore neoplastico cronico, herpes zoster (fuoco di San Antonio) e quis nostrud exercitation nevralgie post erpetiche, nevralgie trigeminali, ullamco neuropatia laboris nisi ut diabetica e vascolare, esiti di interventi chirurgici (mastectomia, aliquip ex interventi ea commodo correttivi sulla colonna vertebrale, arto fantasma, esiti di ernia consequat. plastica), Duis esiti aute di interventi di terapie radianti e esiti di trauma e patologie del irure connettivo. dolor in reprehenderit in voluptate La malattia dolore può provocare nelle persone velit ansia, esse cillum depressione, dolore disturbi del sonno, sfiducia, affaticamento e paura, condizionando eu fugiat nulla pariatur. la qualità della vita e influenzando negativamente la capacitàexcepteur lavorativa, sint la occaecat sfera affettiva e relazionale. cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id È importante ricordare che non sempre si può guarire dal dolore, certo è est laborum. invece che si può curare. "Lorem ipsum dolor sit Per questo è necessario un intervento tempestivo amet, consectetur che si occupi del paziente a livello terapeutico, psicologico adipiscing e sociale, elit, sedcoinvolgendo professionisti diversi che rispondano in toto eiusmod ai bisogni tempor del singolo e della sua famiglia. incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum."

7 RED: la rete per la presa in carico dei pazienti complessi Il ruolo primario nella gestione dei pazienti con dolore cronico è sicuramente riservato ai medici di medicina generale che offrono una prima risposta alle esigenze di cura e intervengono sul dolore. I pazienti con dolore acuto o cronico caratterizzati dalla complessità della patologia, dalla difficoltà di inquadramento del tipo di dolore o dalla necessità di procedure specialistiche devono, invece, essere indirizzati verso i centri di cura del dolore specializzati, organizzati a Milano in una rete assistenziale RED. Questa rete, che coinvolge i centri già attivi sul territorio, rappresenta un riferimento per il medico di medicina generale, ed ha l obiettivo di rendere più accessibile la cura del dolore al paziente adulto e pediatrico. Per accedere alla rete il medico di medicina generale alle prese con un caso complesso identifica il centro ospedaliero più idoneo e contatta direttamente lo specialista di riferimento. Questo, valutato il caso, farà accedere direttamente al centro il paziente per una presa in carico tempestiva e specialistica. Attraverso questo semplice manuale vengono descritti brevemente i vari centri milanesi e indicati i contatti diretti per i medici e il numero di visite riservate alla rete. In allegato lo schema con la mappatura sintetica dell offerta algologica milanese utile all identificazione del centro più idoneo. CONTATTI Per eventuali dubbi, difficoltà o suggerimenti: red@ospedaleniguarda.it Segreteria: lun-ven: Punto terapia del dolore: lun-ven:

8 I centri della rete - ASST Grande Ospedale Metropolitano Niguarda, pag. 8 - ASST Fatebenefratelli-Sacco, pag. 9 - ASST Gaetano Pini, pag. 10 Lorem ipsum dolor sit amet, consectetur - ASST Nord Milano, pag. 11 adipiscing elit, sed do eiusmod tempor incididunt ut labore et - ASST Santi Paolo e Carlo, pag. 12 dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation - Fondazione IRCCS Ca' Granda - Ospedale Maggiore ullamco laboris Policlinico, nisi ut pag. 13 aliquip ex ea commodo consequat. Duis aute irure dolor in - Fondazione IRCCS - Istituto Nazionale dei Tumori, pag.14 - Istituto Clinico Città Studi, pag.15 - Istituto Europeo di Oncologia - IEO, pag.16 reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum. "Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum."

9 Gli schemi terapeutici per la cura del dolore Gli schemi terapeutici per curare il dolore prevedono l utilizzo di diversi trattamenti: Terapie antalgiche farmacologiche: Lorem ipsum dolor sit la terapia del dolore cronico è basata su step amet, successivi consectetur in cui, a partire da una prescrizione farmacologica di base, si possono adipiscingcol elit, tempo sed do aggiungere nuovi medicinali o aumentare i dosaggi. I farmaci eiusmod di tempor primo step vengono utilizzati per il dolore lieve - moderato, e sono incididunt solitamente ut labore i salicilati et (come l ASA), i FANS (antiinfiammatori non steroidei) dolore e il paracetamolo. magna aliqua. Ut Se questa terapia non è efficace o lo è parzialmente, si enim passa ad ai minim farmaci veniam, di secondo quis nostrud exercitation step per dolori da moderati a severi (oppiodi deboli, non di derivazione ullamco laboris nisi ut morfinica). In caso di dolori intensi o gravi si arriva ai farmaci del terzo aliquip ex ea commodo step, di natura morfinica (oppiacei maggiori). consequat. In aggiunta, Duis aute il protocollo dell Organizzazione Mondiale della Sanità irure - OMS dolor in consiglia anche la prescrizione di antidepressivi e ansiolitici, reprehenderit associati agli in voluptate analgesici e antalgici, che aiutano a ridurre gli effetti secondari velit esse della cillum sindrome dolore dolorosa (depressione, insonnia...) e possono essere introdotti eu fugiat nulla in qualsiasi pariatur. momento la situazione clinica lo richieda. Excepteur sint occaecat Dal momento che il paziente con dolore cronico cupidatat a volte non proident, rischia di dover assumere la terapia per tutto l arco della propria sunt in culpa vita, qui è officia importante un continuo monitoraggio da parte del medico deserunt e attento mollit anim controllo id degli effetti collaterali e dell efficacia nel tempo del piano est laborum. terapeutico. "Lorem ipsum dolor sit amet, consectetur Terapie antalgiche invasive minori: adipiscing elit, sed do queste procedure possono essere attuate in eiusmod regime ambulatoriale tempor o di day hospital e riguardano abitualmente tecniche incididunt infiltrative ut labore e tecniche et di blocco nervoso periferico. I blocchi nervosi dolore consistono magna aliqua. nell interruzione Ut della conduzione di un nervo periferico enim con ad un minim anestetico veniam, locale, interrompendo la percezione (nocicezione) quis del nostrud dolore exercitation lungo le vie di conduzione dello stimolo doloroso. ullamco laboris nisi ut aliquip ex ea commodo Terapie antalgiche invasive maggiori: consequat. Duis aute possono prevedere l impianto di sistemi per irure infusione dolor in continua di farmaci e/o neuro modulazione centrale periferica, neuro reprehenderit lesione. Questi in voluptate trattamenti velit esse cillum dolore si effettuano in regime di ricovero (ordinario o week hospital). eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum."

10 Terapia dei sintomi collaterali al dolore: consiste principalmente nel fornire un accurata informazione ed educazione nello stile di vita e alimentazione, oltre che nell utilizzo di specifici farmaci per prevenire o controllare eventuali effetti collaterali. Supporto e valutazione psicologica: il dolore cronico è in quasi la metà dei casi correlato ad una sintomatologia ansioso-depressiva di tipo reattivo; questa condizione porta ad aggravare la percezione del dolore diventando un reale ostacolo al buon esito della cura. Per questa ragione è importante che il paziente Loreme ipsum i suoi dolor familiari sit vengano supportati e accompagnati lungo l intero amet, percorso. consectetur La valutazione psicologica, invece, mira all esplorazione delle adipiscing diverse elit, aree seddella do vita del paziente (sociale, relazionale, familiare o altro) eiusmod e all analisi tempor della compliance (osservanza della terapia), delle aspettative e incididunt del significato ut laboredi etmalattia, al fine di stabilire, nell equipe multidisciplinare, dolore l idoneità magna aliqua. del Ut soggetto candidato a terapie invasive. enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut Follow up - valutazione dei risultati: aliquip ex ea commodo continuo controllo del paziente e periodica consequat. registrazione Duisdell andamento aute della malattia e della cura. Al fine di valutare irure dolor l efficacia in del percorso terapeutico attuato è importante verificare la reprehenderit condizione in complessiva voluptate del paziente sia in termini di riduzione dell intensità velit esse cillum del dolore che di miglioramento della qualità di vita. eu fugiat nulla pariatur. Excepteur sint occaecat Terapie di supporto: cupidatat non proident, terapie integrative per il trattamento dei sintomi sunt in collaterali, culpa qui officia valutazione e supporto psicologico. deserunt mollit anim id est laborum. "Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum."

11 Le principali tecniche antalgiche 1) Blocco epidurale antalgico Il Blocco Epidurale Antalgico consiste nel somministrare una miscela di anestetico locale e di un derivato cortisonico su una specifica radice nervosa peridurale (cioè sulle fibre nervose poco dopo la loro emergenza dal midollo spinale). Per quali patologie: lombalgia, dolore da infiammazione di una radice nervosa come quello della sciatica (con o senza ernia del disco), della cervicobrachialgia (con o senza ernia del Lorem disco), ipsumcervicalgia, dolor sit nevralgie periferiche e di nervi cranici e dell herpes zoster. amet, consectetur adipiscing elit, sed do eiusmod tempor 2)Posizionamento del catetere di Pasha, epiduroscopia, incididunt ut labore et epidurolisi. dolore magna aliqua. Ut Cateteri di Pasha Trattamento di neuromodulazione enim ad minim che usa veniam, correnti in radio frequenza a dimissione multipolare applicate quiscon nostrud un exercitation catetere in regione radicolare, gangliare, sui nervi cranici, e periferici. ullamco L effetto laborisdi nisi stordimento ut del nervo azzera l informazione dolorosa e il sollievo aliquip è di ex media-lunga ea commododurata. Per quali patologie: radicolopatie intrattabili, nevralgie consequat. periferiche Duis e aute di nervi cranici. Epiduroscopia - Epidurolisi Consiste nell introdurre irure dolor una in microsonda a fibre ottiche attraverso cui è possibile visualizzare i reprehenderit tessuti e i nervi in voluptate contenuti nello spazio epidurale (epiduroscopia). Con l utilizzo velit di esse catetere cilluma dolore fibre ottiche e a radiofrequenza ablativa possono essere liberate eu fugiat eventuali nulla aderenze pariatur. connesse alla formazione di cicatrici post operatorie o post Excepteur traumatiche, sint occaecat riducendo così la cupidatat non proident, compressione delle radici nervose. Si effettua sotto anestesia locale o blanda sunt in culpa qui officia sedazione. deserunt mollit anim id Per quali patologie: dolore lombare persistente est laborum. in fallimenti della chirurgia lombare (failed back syndrome surgery), dolore "Lorem alla ipsum schiena dolor acuto sit e cronico, elementi compressivi sulle radici spinali, ernia amet, discale, consectetur dolori lombari senza diagnosi certa. adipiscing elit, sed do eiusmod tempor 3) Radiofrequenza termica o pulsata: trattamento incididunt delle ut labore faccette articolari, sacroeliache dolore magna aliqua. Ut La radiofrequenza termica o pulsata consiste enim nell introduzione ad minim veniam, sulle faccette articolari lungo il decorso della colonna (cervicale, quis nostrud dorsale, exercitation lombare e sacrale) ullamco laboris nisi ut di un microelettrodo con punta attiva stimolante che raggiunge la radice dei aliquip ex ea commodo nervi spinali. Il sistema è collegato ad un generatore di corrente che effettua il consequat. Duis aute trattamento antalgico, sotto guida radiologica, irure sull area dolor in anatomica bersaglio creando uno stordimento del ramo sensitivo dell area reprehenderit interessata. voluptate Per quali patologie: patologie di natura osteodegenerativa-reumatica velit esse cillum dolore che non rispondono al trattamento farmacologico a livello eulombo-sacrale. fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum."

12 4) Posizionamento di elettrocatetere parziale/definitivo-midollare (centrale), periferico e sottocutaneao. Il sistema di neurostimolazione è costituito da un elettrocatetere, da un generatore di impulsi e da un programmatore telemetrico. La procedura viene effettuata in due tempi: la prima fase di impianto dell elettrodo stimolatore nello spazio peridurale e di verifica della sua efficacia terapeutica, la seconda fase di impianto del generatore ( pacemaker del dolore ) che alimenta l elettrodo. Le linee guida internazionali indicano la necessità della valutazione psicologica del paziente candidato a questo tipo di procedura. I limiti posti dalla breve durata della batteria del Lorem generatore ipsum dolor impiantato sit sono oggi superati da batterie ricaricabili che garantiscono amet, consectetur una durata maggiore, ma necessitano di una più complessa gestione adipiscing da parte elit, del sedpaziente. do Per aiutare nell adattamento alla nuova condizione eiusmod di vita, tempor vengono garantiti cicli di colloqui psicologici. Questi sistemi sono incididunt anche ut labore applicati et a livello perifierico, in particolare a livello occipitale, dolore per magna il trattamento aliqua. Ut delle emicrania cronica refrattaria a tutti i trattamenti enim farmacologici. ad minim veniam, Per quali patologie: dolore regionale complesso, quis nostrudcefalee exercitation intrattabili, radicolopatie refrattarie, esiti di interventi ullamco alla colonna, laboris nisi vasculopatia ut aliquip ex ea commodo periferica, dolore da arto fantasma. consequat. Duis aute irure dolor in 5) Posizionamento pompa intratecalea a scopo reprehenderit antalgico in voluptate Consiste nella somministrazione di farmaci (morfina, velit esse baclofene cillum dolore o anestetici locali) direttamente nel liquido cerebrospinale eu nei fugiat casi nulla di dolore pariatur. refrattario a tutte le altre tecniche. L infusione avviene tramite Excepteur l introduzione sint occaecat nello spazio intratecale (subaracnoideo) di un catetere collegato cupidatat ad non una proident, pompa inserita generalmente a livello addominale o toracico. sunt in La culpa pompa, qui officia in base alle dimensioni e alla velocità di infusione del farmaco, deserunt viene mollit anim periodicamente id ricaricata con un sistema percutaneo. est laborum. Per quali patologie: a seconda dei farmaci iniettati "Loremla ipsum tecnica dolor è sit indicata per il dolore cronico intrattabile in diverse sindromi amet, dolorose, consectetur vasculopatie in adipiscing elit, sed do fase avanzata, neuropatie periferiche post-erpetiche, diabetiche, postattiniche, patologie del rachide quali la sindrome da fallimento chirurgico eiusmod tempor incididunt ut labore et spinale (Failed Back Surgery Syndrome, FBSS), dolore magna stenosi aliqua. spinale Ut esiti di lesione cerebrali (ictus cerebrali), sindrome enim talamica, ad minim lesioni veniam, del midollo spinale da traumi o siringomielia/ neurofibromatosi, quis nostrudspasticità, exercitation sclerosi multipla, arto fantasma, patologie neoplastiche ullamco primarie laboris o secondarie. nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum."

13 I centri della rete ASST Grande Ospedale Metropolitano Niguarda Il Centro di Terapia del Dolore di II livello di Niguarda, HUB della rete RED, ha sviluppato negli anni un modello integrato d avanguardia per la presa in carico della persona con sindrome dolorosa in tutte le sue forme; è grado di offrire un intero percorso di cura, dalla diagnosi, al trattamento, follow-up, riabilitazione fisica e psico-sociale e servizio di counselling. Vengono trattate tutte le sindromi dolorose degenerative oncologiche e non oncologiche, acute e croniche sia nell adulto che nel bambino. Per una cura efficace il Centro offre un intervento multidisciplinare e multispecialistico che si occupa del bisogno globale della persona a livello diagnostico terapeutico, psicologico e sociale per garantire la continuità assistenziale. Per favorire la rete territoriale sono stati coinvolti inoltre professionisti Lorem ipsumdiversi dolor e sit volontari formati per rispondere ai bisogni del singola persona e della sua amet, famiglia; consectetur è nato per questo il Punto Terapia del Dolore, per il monitoraggio e consulling in adipiscing costante elit, collaborazione sed do tra medici, psicologi, infermieri e il settore del volontariato. eiusmod tempor Il setting di cura offerto si articola in regime ambulatoriale, incididunt dayut hospital/day labore et surgery e ricovero ordinario in base alla complessità delle dolore procedure magna aliqua. e alla Ut gravità delle copatologie del paziente. enim ad minim veniam, Per la lista completa delle patologie trattate vedi allegato quis La nostrud mappa exercitation dell offerta algologica milanese ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute Le terapie Gli schemi terapeutici per curare il dolore e migliorare la qualità irure dolor di vita in delle persone prevedono l utilizzo di diverse procedure in base all eziopatogenesi reprehenderit della stessa in voluptate sindrome dolorosa. Presso Niguarda è possibile accedere ad un percorso velit esse integrato cillume dolore globale attraverso l impiego di tute le terapie farmacologiche, le terapie eu invasive fugiatminori nulla pariatur. (di primo e secondo livello), le terapie invasive maggiori (di terzo livello), Excepteur le terapie di sint supporto occaecat e dei sintomi associati oltre alle tecniche integrative della medicina complementare. cupidatat non proident, Per la lista completa delle terapie offerte vedi allegato sunt La in mappa culpa qui dell offerta officia algologica milanese. deserunt mollit anim id est laborum. "Lorem ipsum dolor sit Come prenotare una visita amet, consectetur Per rivolgersi all ambulatorio di Terapia del Dolore è necessaria l impegnativa per visita adipiscing elit, sed do anestesiologica per terapia del dolore. Numero Verde di Prenotazione Regionale: eiusmod, lun-sab: tempor Sportello Prenotazione Niguarda: Blocco Sud, lun-ven: incididunt ut / sab: labore et Blocco Nord: lun-ven: dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation Contatti diretti e posti riservati ad accesso ullamco diretto laboris su segnalazione nisi ut del medico di medicina generale aliquip ex ea commodo Referente della rete: Dott. Paolo Notaro consequat. Duis aute Mail dedicata: paolo.notaro@ospedaleniguarda.it irure dolor in Telefono: / / reprehenderit in voluptate Numero di visite disponibili: 5 posti a settimana velit esse cillum dolore eu fugiat nulla pariatur. Supporto: Associazioni di volontariato Excepteur sint occaecat NoPain Onlus, tel: : lun - ven: cupidatat non proident, sunt in culpa qui officia ASST GRANDE OSPEDALE METROPOLITANO NIGUARDA, P.ZZA OSPEDALE MAGGIORE 3, MI deserunt mollit anim id est laborum."

14 ASST Fatebenefratelli Sacco La terapia del dolore è garantita durante il percorso di cura, in funzione dei bisogni dell assistito e in integrazione con le specifiche fasi terapeutiche delle patologie acute e croniche. Il centro è caratterizzato da specialisti in Anestesia e Rianimazione dedicati alla Terapia del Dolore e da altre figure professionali essenziali per un approccio multidisciplinare. La malattia dolore viene trattata in regime ambulatoriale, Day Surgery, MAC, ricovero ordinario nei diversi centro del dolore. Sono trattate tutte le patologie dolorose sia benigne che di origine neoplastica con particolare riferimento al dolore Muscolo-scheletrico, Dolore Pelvico, Dolore Neuropatico, Dolore da Vasculopatia e dolore secondario a patologie infiammatorie croniche intestinali. Per la lista completa delle patologie trattate vedi allegato La mappa dell offerta algologica milanese. Le terapie Gli schemi terapeutici per curare il dolore prevedono l utilizzo di diversi trattamenti. Presso il Centro vengono offerti trattamenti antalgici farmacologici, terapie invasive minori di primo livello, presso l Ospedale Sacco anche invasive maggiori (di secondo e terzo livello), terapie di supporto e medicina complementare. Per la lista completa delle terapie offerte vedi allegato La mappa dell offerta algologica milanese. Come prenotare una visita Per rivolgersi all ambulatorio di Terapia del Dolore è necessaria l impegnativa per visita anestesiologica per terapia del dolore. Numero Verde di Prenotazione Regionale: , lun-sab: Sportello Prenotazione lun- sab: 7:30-16:30 - Presidio Ospedale Sacco; lun- sab: 7:30-17:30 - Presidio Ospedale Fatebenefratelli Contatti diretti e posti riservati ad accesso diretto su segnalazione del medico di medicina generale PRESIDIO OSPEDALE SACCO Referente della rete: Dott. Roberto Rech Mail dedicata: tdl.sacco@asst-fbf-sacco.it Telefono: Numero di visite disponibili: 1/2 posti a settimana PRESIDIO OSPEDALE FATEBENEFRATELLI E OFTALMICO-MELLONI Referente della rete: Dott.ssa Silvia Codeleoncini Mail dedicata: tdl.fbf.pomm@asst-fbf-sacco.it Numero di visite disponibili: 1/2 posti a settimana PRESIDIO SACCO, VIA G.B.GRASSI 52, MILANO PRESIDIO FATEBENEFRATELLI E OFTALMICO-MELLONI, P.ZZA P. CLOTILDE, 3, MI PRESIDIO MACEDONIO MELLONI, VIA M. MELLONI, 52, MILANO

15 ASST Gaetano Pini - CTO Il centro di Terapia del Dolore dell Ospedale G. Pini si occupa del trattamento di patologie acute e croniche a carico dell apparato miosteoarticolare, in relazione alla specificità ortopedica dei pazienti trattati. Il centro si rivolge a pazienti trattati e spesso ospedalizzati presso l ospedale in un percorso di continuità assistenziale dopo la dimissione, e nel contempo tratta pazienti che accedono dal territorio metropolitano, regionale ed anche nazionale. La stretta collaborazione con le divisioni chirurgiche, con la reumatologia, con la radiodiagnostica e radioterapia, e con gli specialisti neurologi e fisiatri, consente un approccio multidisciplinare delle patologie che accedono alla nostra osservazione. Per la lista completa delle patologie trattate vedi allegato La mappa dell offerta algologica milanese. Le terapie Gli schemi terapeutici per curare il dolore prevedono l utilizzo di diversi trattamenti a livello ambulatoriale. In particolare vengono offerti trattamenti antalgici farmacologici e terapie invasive minori di primo livello. Per la lista completa delle terapie offerte vedi allegato La mappa dell offerta algologica milanese. Come prenotare una visita Per rivolgersi all ambulatorio di Terapia del Dolore è necessaria l impegnativa per visita anestesiologica per terapia del dolore. Sportelli: Lun-ven: Contatti diretti e posti riservati ad accesso diretto su segnalazione del medico di medicina generale Referente della rete: Dott. Alfonso D Aloia Mail dedicata: terapiadeldolore@asst-pini-cto.it Telefono: segreteria Numero di visite disponibili: 1 posto a settimana Supporto: Associazioni di volontariato AILAD (Associazione Italiana Lotta Al Dolore AVO (Associazione Volontari Ospedalieri) ArgItalia (Associazione Artrite Reumatoide Giovanile Italia Onlus) ASST GAETANO PINI - CTO, VIA PINI 9, MILANO

16 ASST Nord Milano (Ospedale Bassini Cinisello Balsamo) Presso le Cure Palliative e Terapia del Dolore vengono assistiti pazienti con dolore cronico oncologico e del dolore cronico benigno, quale dolore muscolo scheletrico nelle patologie osteo-articolari, dolore neuropatico, nevralgie, cefalee, fibromi algia. Per la lista completa delle patologie trattate vedi allegato La mappa dell offerta algologica milanese. Le terapie Gli schemi terapeutici per la cura del dolore cronico si basano su setting ambulatoriali, ed in particolare vengono offerti trattamenti antalgici farmacologici e terapie invasive minori di primo livello. Per la lista completa delle terapie offerte vedi allegato La mappa dell offerta algologica milanese. Come prenotare una visita Per rivolgersi all ambulatorio di Terapia del Dolore è necessaria l impegnativa per visita anestesiologica per terapia del dolore. Telefono: , Lun-ven: Contatti diretti e posti riservati ad accesso diretto su segnalazione del medico di medicina generale Referente della rete: Dott. Franco Rizzi Mail dedicata: franco.rizzi@asst-nordmilano.it Telefono: Numero di visite disponibili: 1 posto a settimana Supporto: Associazioni di volontariato Una Mano alla Vita Onlus- Milano OSPEDALE BASSINI, VIA MASSIMO GORKI, 50, CINISELLO BALSAMO (MI)

17 ASST Santi Paolo e Carlo Il centro di terapia del Dolore dell'ospedale San Paolo si occupa di dolore cronico benigno. Le principali patologie trattate sono: Patologie rachidee, Esiti di interventi sulla colonna, Nevralgia post herpetica, Polineuropatie, Dolore osteoarticolare cronico, Dolore post intervento chirurgico, Cefalee. Il Centro di terapia del Dolore dell Ospedale San Carlo Borromeo si occupa prevalentemente di: Patologie a carico del rachide, Esiti di interventi correttivi sulla colonna vertebrale, Nevralgie, Dolore neuropatico, Dolore neoplastico cronico, Dolori in osteoporosi, Sindrome Fibromialgica, Esiti di interventi chirurgici, esiti di terapie radianti e esiti di trauma e patologie del connettivo. Vengono erogate prestazioni in regime ambulatoriale. Per la lista completa delle patologie trattate vedi allegato La mappa dell offerta algologica milanese. Le terapie Presso L Ospedale San Paolo vengono offerte terapie antalgiche farmacologiche, alle quali presso l ospedale San Carlo si aggiungo le terapie invasive minori di primo livello. Per la lista completa delle terapie offerte vedi allegato La mappa dell offerta algologica milanese. Come prenotare una visita Per rivolgersi all ambulatorio di Terapia del Dolore è necessaria l impegnativa per visita anestesiologica per terapia del dolore. Numero Verde di Prenotazione Regionale: , lun-sab: Sportello Prenotazione: CUP San Carlo: lun-ven: , sab: CUP San Paolo: lun-ven: ,30; Contatti diretti e posti riservati ad accesso diretto su segnalazione del medico di medicina generale PRESIDIO SAN CARLO BORROMEO Referente della rete: Dott. Stefano Arghetti Mail dedicata: stefano.arghetti@asst-santipaolocarlo.it Telefono: Segreteria: ambulatorio (martedi-mercoledi-giovedi: ) Numero di visite disponibili: 3 posti a settimana PRESIDIO SAN PAOLO Referente della rete: Dott.ssa Laura Albonico Mail dedicata: laura.albonico@asst-santipaolocarlo.it Telefono: (blocco operatorio); ambulatorio Numero di visite disponibili: 1 posto a settimana PRESIDIO SAN CARLO BORROMEO, VIA PIO II, 3, MILANO PRESIDIO SAN PAOLO, VIA A. RUDINI, 8, 20142, MILANO

18 Fondazione IRCCS Ca Granda Ospedale Maggiore Policlinico Il centro di Medicina del Dolore Mario Tiengo eroga prestazioni sanitarie in regime ambulatoriale. E caratterizzato da un alta specializzazione nel trattamento delle sindromi da dolore cronico benigno e maligno, e in particolare vengono seguiti pazienti con Dolore viscerale (per lo più ginecologico), Dolore pediatrico, Dolore psicogeno, Dolore osteo artro mio fasciale, Dolore neuropatico, Dolore vascolare e Dolore cefalico. Per la lista completa delle patologie trattate vedi allegato La mappa dell offerta algologica milanese. Le terapie Presso il Policlinico di Milano viene offerto un approccio terapeutico di cura alla malattia dolore che va dalle terapie antalgiche farmacologiche, alle terapie invasive minori di primo livello, fino all attivazione di un percorso di follow up e valutazione dei risultati. Il paziente con dolore cronico ha a disposizione anche trattamenti per i sintomi collaterali al dolore, terapie integrative, supporto e valutazione psicologica. Per la lista completa delle terapie offerte vedi allegato La mappa dell offerta algologica milanese. Come prenotare una visita Per rivolgersi all ambulatorio di Terapia del Dolore è necessaria l impegnativa per visita anestesiologica per terapia del dolore. Telefono: , lun-ven: Contatti diretti e posti riservati ad accesso diretto su segnalazione del medico di medicina generale Referente della rete: Dott. Paolo Mariconti Telefono: Numero di visite disponibili: 1 posto a settimana FONDAZIONE IRCCA CA GRANDA PADIGLIONE BERGAMASCO, VIA DELLA COMMENDA 19, MILANO

19 Fondazione IRCCS Istituto Nazionale dei Tumori La struttura offre visita ambulatoriale specialistica di terapia del dolore e visita di cure palliative per pazienti con dolore oncologico dovuto alla malattia neoplastica in tutte le fasi di trattamento. E inoltre disponibile il ricovero in day-hospital per effettuare terapie infusionali e per l adeguamento della terapia di base. Possono essere trattati anche pazienti con dolore cronico che, già curati per una patologia oncologic,a soffrano di esiti dolorosi cronici dei trattamenti volti al controllo della patologia di base. Per i malati con sintomi complessi è possibile il ricovero presso l hospice quando si verifichino dolori difficili e resistenti alle terapie ambulatoriali che meritano una valutazione multidisciplinare per individuare le terapie più efficaci. La struttura offre la più stretta cooperazione multidisciplinare con le altre specialità che si rivolgono al malato oncologico. Per la lista completa delle patologie trattate vedi allegato La mappa dell offerta algologica milanese. Le terapie Presso l Istituto vengono offerte terapie antalgiche farmacologiche, terapie invasive minori di primo e secondo livello, terapie di supporto e medicina complementare. Per la lista completa delle terapie offerte vedi allegato La mappa dell offerta algologica milanese. Come prenotare una visita Per rivolgersi all ambulatorio di Terapia del Dolore è necessaria l impegnativa per visita anestesiologica per terapia del dolore. Per prenotare recarsi presso l ambulatorio: lun-ven: / Telefono: / : dalle alle Contatti diretti e posti riservati ad accesso diretto su segnalazione del medico di medicina generale Referente della rete: Dott. Fabio Formaglio Mail dedicata:fabio.formaglio@istitutotumori.mi.it Telefono: 02/ / Numero di visite disponibili: 1 posto a settimana FONDAZIONE IRCCS ISTITUTO NAZIONALE DEI TUMORI, VIA G. VENEZIAN 1, MILANO

20 Istituto Clinico Città Studi Presso il centro di terapia del Dolore dell Istituto Clinico Città Studi lavorano professionisti di Anestesia e Terapia del Dolore che si avvalgono della cooperazione di altri specialisti e figure professionali. Vengono curate in particolare le patologie da Dolore cronico benigno, dolore di origine rachidea, dolore neuropatico, in regime ambulatoriale, day surgery/day hospital e ricovero ordinario. Per la lista completa delle patologie trattate vedi allegato La mappa dell offerta algologica milanese. Le terapie Presso l Istituto viene offerto un approccio terapeutico completo attraverso terapie antalgiche farmacologiche, terapie invasive minori di primo e secondo livello, terapie invasive maggiori (di terzo livello), terapie di supporto e medicina complementare, followup. Per la lista completa delle terapie offerte vedi allegato La mappa dell offerta algologica milanese. Come prenotare una visita Per rivolgersi all ambulatorio di Terapia del Dolore è necessaria l impegnativa per visita anestesiologica per terapia del dolore. -Telefono: Contatti diretti e posti riservati ad accesso diretto su segnalazione del medico di medicina generale Referente della rete: Dott. Giuseppe Sala Mail dedicata: terapiadeldolore@ic-cittastudi.it Telefono: Numero di visite disponibili: 2 posti a settimana ISTITUTO CLINICO CITTA STUDI, VIA JOMMELLI 17 / VIA CATALANI 4, MILANO

21 Istituto Europeo di Oncologia - IEO L IRCCS Istituto Europeo di Oncologia (IEO) dedicato alle patologie oncologiche, offre un percorso di cura ai pazienti affetti da dolore cronico a seguito di patologie degenerativa (Artrosi, Osteoporosi, Mal di schiena, ernie discali, SLA; SM; malattie degenerative e gravi insufficienze d organo in fase terminale) e Dolore oncologico. I trattamenti vengono erogati in regime ambulatoriale, MAC, Day surgery, e ricovero ordinario. Per la lista completa delle patologie trattate vedi allegato La mappa dell offerta algologica milanese. Le terapie Presso l Istituto viene offerto un approccio terapeutico completo attraverso terapie antalgiche farmacologiche, terapie invasive minori di primo e secondo livello, terapie invasive maggiori (di terzo livello), terapie di supporto e medicina complementare, follw-up e valutazione dei risultati. Per la lista completa delle terapie offerte vedi allegato La mappa dell offerta algologica milanese. Come prenotare una visita Per rivolgersi all ambulatorio di Terapia del Dolore è necessaria l impegnativa per visita anestesiologica per terapia del dolore. Telefono: Contatti diretti e posti riservati ad accesso diretto su segnalazione del medico di medicina generale Referente della rete: Dott. Vittorio Guardamagna Mail dedicata: unita.terapiadolore@ieo.it Telefono: Numero di visite disponibili: 4 a settimana ISTITUTO EUROPEO DI ONCOLOGIA, VIA RIPAMONTI 435, MILANO

22 Mappa dell offerta algologica milanese

23 Mappa dell offerta milanese ASST Ospedale Niguarda Presidio Sacco Presidio Fatebenefratelli Presidio Melloni ASST NORD Milano Presidio San Carlo Presidio San Paolo Ospedale Maggiore Policlinico Istituto Nazionale dei Tumori Isituto clinico Citta Studi Cefalea tensiva x x x x x x x x Cefalea a grappolo ed emicrania parossistica x x Emicrania x x x x x Emicrania refrattaria x x Altre Cefalee x x x x x Nevralgia occipitale x x x x x Nevralgia del trigeminale x x x x x x x x x Altre nevralgie facciali x x x x x x x Altri dolori facciali x x x x x x Cervicalgia con e senza irradiazione alla spalla e all arto x superiore x x x x x x x x Cervicalgia dea vari tipi di danno tessutale di diverse x patogenesi x x x x x x Cervicalgia da radicolopatia x x x x x x x x x Dolore cervicale neuropatico centrale x x x x Plessopatia brachiale x x x x x x Dolore a spalla ed arto superiore da enteropatia e altri x danni articolari e periarticolari x x x x x x x Dolore avambraccio e mano x x x x x x x x Sindrome del tunnel carpale x x x x x x Dolore toracico x x x x x x x x Radicolopatia toracica di varia patogenesi x x x x x x x x x Sindrome viscerale toracica x x x x x x x x Dolore addominale di origine viscerale da diverse x patogenesi x x x x x x x Lombalgia x x x x x x x x x Lombosacrale prevalentemente senza irradiazione all arto inferiore Lombosacrale prevalentemente con irradiazione all arto inferiore x x x x x x x x x x x x x x x x x x Istituto europeo oncologia IEO

24 ASST Ospedale Niguarda Presidio Sacco Presidio Fatebenefratelli Presidio Melloni ASST NORD Milano Presidio San Carlo Presidio San Paolo Ospedale Maggiore Policlinico Istituto Nazionale dei Tumori Isituto clinico Citta Studi Lombosciatalgia x x x x x x x x x Dolore in esiti correttivi della colonna (failed back x sindrome surgery) x x x x x x x Plessopatia lombosacrale x x x x x x x x Sindrome quadrato dei lombi x x x x x x Sindrome del piriforme x x x x x x x Dolore della patologia della sacro iliaca x x x x x x Dolore da patologia dell anca e della coscia x x x x x x x Dolore da patologia del ginocchio x x x x x x x Dolore pelvico x x x x x x x Dolore perineo e genitale di varia patogenesi x x x x x x x Dolore da endometriosi x x x x x Dolore anale x x x x x x Dolore del pudendo x x x x x Coccidinia x x x x x x Dolore gamba e piede x x x x x x Nevralgia della gamba x x x x x x Meralgia parestesica x x x x x x Metarsalgia di Morton x x x x x x Dolore in Osteoporosi x x x x x x x x x Dolore Frattura vertebrale x x x x x x Dolore in Discite x x x x x x Dolore in Ostemalacia x x x x x x Dolore in protrusione discale x x x x x x x Dolore in ernia discale x x x x x x x Dolore in Malattia di Paget x x x x x x Dolore in Artrite reumatoide x x x x x x x x Dolore spondilite anchilosante x x x x x x x Dolore in osteoartrosi x x x x x x x Dolore in sirigomielia x x x x x Dolore in sindrome di Ehler Danlos x x x Dolore in sindromi immunodepressive x x x x Dolore in esiti di patologie infettive come HIV x x x Dolori articolari e periarticolari x x x x x x x x x Dolori ossei metabolici x x x x x x x Neuropatie periferiche dolorose x x x x x x x Dolore nell infezione da erpes zoster x x x x x x x x x Neuropatia posterpetica x x x x x x x x x Sindromi dolorose regionali complesse x x x x x x x Dolore in corso di drepanocitosi x x Dolore in patologie vascolari x x x x x x x Dolore in patologie del connettivo x x x x x Istituto europeo oncologia IEO

25 ASST Ospedale Niguarda Presidio Sacco Presidio Fatebenefratelli Presidio Melloni ASST NORD Milano Presidio San Carlo Presidio San Paolo Ospedale Maggiore Policlinico Istituto Nazionale dei Tumori Isituto clinico Citta Studi Dolore in malattia di Raynaud x x x x x x Dolore in sclerodermia x x x x x Claudicatio intermittens x x x x x x x Dolore e ulcera x x x x x Dolore in ustioni x x Cicatrix dolorosa x x x x x x x x Sindrome dolorosa in esiti chirurgici x x x x x x x x x Sindromi da nervosa da intrappolamento dei nervi x x x x x x x Moncone da amputazione dolente x x x x x x x x Sindrome dell arto fantasma x x x x x x Sindrome delle gambe senza riposo x x x x x x Dolore neuropatico centrale x x x x x Dolore e in esiti di trauma midollare x x x x x x Dolore e spasticità x x x x x Dolore neuropatico periferico x x x x x x x x x Dolore neuropatico tossico x x x x x Dolore neuropatico alcolico x x x x x Dolore neuropatico diabetico x x x x x x x Dolore neuropatico in esiti di angina pectoris x x x x x Dolore infiammatorio cronico e obesità x x x x x Dolore in artrite x x x x x x x Dolore tessutale di varie origine x x x x x x x x x Sindrome miofasciale x x x x x x x x Fibromialgia x x x x x x x x Il dolore non chirurgico nel bambino x x x Il dolore oncologico nel bambino x x x x x Il dolore nell anziano x x x x x x Il dolore nel paziente con deficit cognitivi x x x x Dolore psicogeno x x x x x Sindrome da overuse da farmaci oppiodi x x x x x Dolore oncologico x x x x x x x x x Dolore da cancro e sindromi algiche neoplastiche x secondarie x x x x x x x Dolore iatrogeno in esiti di trattamenti da terapia radio x e chemioterapici x x x x x TERAPIE FARMACOLOGICHE terapie farmacologiche di primo livello (analgesici non oppioidi) terapie farmacologiche di secondo livello (analgesici oppioidi minori) x x x x x x x x x x x x x x x x x x x x Istituto europeo oncologia IEO

26 ASST Ospedale Niguarda Presidio Sacco Presidio Fatebenefratelli Presidio Melloni ASST NORD Milano Presidio San Carlo Presidio San Paolo Ospedale Maggiore Policlinico Istituto Nazionale dei Tumori Isituto clinico Citta Studi terapie farmacologiche di III liveli ( analgesici oppiodi x maggiori x x x x x x x x x terapia farmacologica con derivati cannabinoidi x x x x x x terapia farmacologica con tossina botulinica x x x TERAPIA INVASIVA ANTALGICA DI PRIMO LIVELLO blocchi nervi periferici x x x x x x x x x trattamenti infiltrativi x x x x x x x x x x mesoterapia x x x x x x x x x x blocchi articolari e periarticolari x x x x x x x x blocchi dei punti trigger x x x x x x x x x x blocchi epidurali x x x x x x x x x TERAPIA INVASIVA ANTALGICA DI SECONDO LIVELLO Blocchi epidurali superselettivi sotto guida x fluoroscopica x x x x x Blocchi del simpatico cervicale e lombare x x x Device per infusione PCA e distrettuale con cateterino x x x x x Discolisi x x x x Epidurolisi x x Epiduroscopia x x x Radiofrequenza periferica x x x x x TERAPIA ANTALGICA MAGGIORE DI TERZO LIVELLO Cifoplastica x x Neuromodulazione centrale farmacologica (pompa x impiantabile midollare) x x Neuromodulazione centrale midollare elettrica x (pacemaker del dolore) x x x x Neuromodulazione periferica elettrica x x x Neurostimolazione occipitale in alcune forme di x cefalea refrattaria a tutte le terapie mediche x x x Radiofrequenza centrale x x x x Simpaticolisi x x Stimolazione e lisi selettiva rami spinali x x Stimolazione gangliare x x TERAPIE DI SUPPORTO E MEDICINA COMPLEMENTARE Supporto psicologico x x x x x x x Agopuntura x x x x x x Scrambler therapy x Istituto europeo oncologia IEO

27 ASST Ospedale Niguarda Presidio Sacco Presidio Fatebenefratelli Presidio Melloni ASST NORD Milano Presidio San Carlo Presidio San Paolo Ospedale Maggiore Policlinico Istituto Nazionale dei Tumori Isituto clinico Citta Studi Ozonoterapia x Ipnosi x x x Terapie dei sintomi correlati ai trattameti x x x x x SETTING DI EROGAZIONE Ambulatorio x x x x x x x x x x MAC x x x x x Day hospital/day surgery x x x x x x x Ricovero ordinario x x x x Istituto europeo oncologia IEO

28 Contatti RED Rete Terapia del Dolore Milano Per info o chiarimenti invia una mail a: red@ospedaleniguarda.it Segreteria: lun-ven: Punto terapia del dolore: lun-ven:

29 Progetti menzionati Regione Liguria Struttura: Azienda Ligure Sanitaria A.Li.Sa. titolo del Progetto Progetto scuola Regione Emilia Romagna Struttura: Azienda Ospedaliera IRCCS Arcispedale S. Maria Nuova di Reggio Emilia, Struttura Complessa di Pediatria titolo del Progetto Ambulatorio pazienti pediatrici clinicamente complessi ( children with medical complexity CMC )

30 Regione Liguria Scheda: #15 - Liguria Nome Struttura: Regione: Indirizzo: Sito di Riferimento: Resp. Struttura: Assess. proponente: Titolo del Progetto: Azienda Ligure Sanitaria - A.Li.Sa. Liguria Piazza della Vittoria, 15- Genova Direttore Sociosanitario Enrica Orsi Assessorato Sanità e Politiche socio sanitarie della Regione Liguria Progetto scuola Data: 04/01/ /06/2017 Descrizione/Obiettivi: Il Progetto scuola della SorridiconPietro Onlus (in collaborazione con l'istituto Giannina Gaslini e la ASL 1 Imperiese - link: pilota nella provincia di Imperia, nasce da un idea innovativa dei ragazzi dell associazione per sensibilizzare i giovani riguardo alle cure palliative pediatriche. Il progetto prevede una serie di incontri della durata di un ora circa, riservati agli studenti delle scuole di secondo grado. L'incontro, condotto dalle ragazze della Onlus ideatrici e referenti per il progetto, si sviluppa con una presentazione iniziale della Onlus, seguita dall'illustrazione delle finalità dell associazione, nel caso in cui queste non siano conosciute dagli studenti (in caso contrario, invece, viene chiesto proprio a loro per quale motivo la conoscano e se sappiano cosa siano le cure palliative, al fine di fornire eventualmente alcuni chiarimenti in tal senso). Cuore dell incontro è la visione del corto, di circa 13 minuti, interamente realizzato dalla SorridiconPietro (link: considerato lo strumento più incisivo utilizzato in questa presentazione, dal momento che propone e sviluppa, con varie tecniche comunicative, i principi delle cure palliative pediatriche, anche grazie alla testimonianza di un adolescente affetta da patologia inguaribile e assistita a domicilio. Infine, una delle Ragazze della Onlus spiega la sua esperienza: lei non ha direttamente conosciuto Pietro, l amico mancato per cui i ragazzi hanno creato, insieme ai suoi genitori, la Onlus, ma ha fatto una scelta, che è quella di fare sempre un qualcosa in più per gli altri, dimostrazione del fatto che ognuno può essere chi decide di essere, aiutando gli altri. Al termine dell incontro, viene chiesto ai partecipanti di scrivere su un foglietto il messaggio ricevuto (il take home message ) per coinvolgere attivamente gli studenti ed affidare loro non un ruolo passivo, ma attivo. Elemento di forza del progetto è che i componenti della Onlus sono quasi coetanei degli studenti coinvolti. Obiettivi: Il progetto è indirizzato agli allievi delle scuole di secondo grado, per rendere loro familiare questo tema, spesso molto distante dalla realtà giovanile. In fase di realizzazione del video, il gruppo di progettazione ha cercato di mettersi nei panni di coloro che ascoltano, in modo da escogitare le migliori strategie per catturare l attenzione dei partecipanti, rendendo meno pesante un tema così delicato da ascoltare e da comprendere. Il progetto si pone l'ambizioso obiettivo di sensibilizzare i più giovani sul tema delle cure palliative, utilizzando un linguaggio vicino al mondo dei non professionisti del settore, ma soprattutto sfruttando la capacità comunicativa dei giovani verso i giovani (peer educations). Risultati: Le aspettative riposte nel progetto ad oggi sono state addirittura superate. Molti ragazzi si sono offerti di collaborare, hanno fatto domande per cercare di capire di più, essendo rimasti incuriositi da una realtà per loro nuova. Il progetto risulta facilmente replicabile ed esportabile in altri contesti. Allegati: Nessuno 21

31 Scheda: #29 - Emilia-Romagna Nome Struttura: Regione: Indirizzo: Sito di Riferimento: Resp. Struttura: Assess. proponente: Titolo del Progetto: Azienda Ospedaliera-IRCCS Arcispedale S.Maria Nuova di Reggio Emilia, Struttura Complessa di Pediatria Emilia-Romagna Viale Umberto I, Reggio Emilia Dr. Sergio Amarri Data: 01/06/ /05/2017 Assessorato Politiche per la Salute Emilia Romagna Ambulatorio pazienti pediatrici clinicamente complessi ( children with medical complexity CMC) Descrizione/Obiettivi: La popolazione della provincia di Reggio Emilia registra, come altrove, un aumento dei pazienti pediatrici clinicamente complessi ( children with medical complexity CMC) seguiti in ospedale e dal servizio infermieristico domiciliare (SID), una recente rilevazione ne contava 289 su tutto il territorio di competenza dell AUSL di Reggio Emilia, tra questi 69 bambini (prevalenza di 6,5/ bambini 0-17 anni) con necessità di cure palliative ed un alta complessità socio/sanitaria. Questa tipologia di pazienti necessita di essere seguita da un team multidisciplinare pediatrico formato da tutti i professionisti competenti per la gestione completa del bambino complesso. Dal 2013 esiste a Reggio Emilia un team nutrizionale pediatrico che si incontra regolarmente, a cadenza bisettimanale, presso la S.C. di Pediatria, e che vede la presenza di un medico nutrizionista e gastroenterologo, di una dietista, di una foniatra, di una logopedista, di un infermiera e di una psicologa. Dal 2016, a seguito dell inserimento nel gruppo di lavoro di una broncopneumologa pediatra completamente formata sulla ventilazione non invasiva, disturbi respiratori del sonno e assistenza respiratoria al bambino complesso, e della collaborazione con la Riabilitazione respiratoria del Presidio Ospedaliero AUSL, sede di Correggio, il gruppo multidisciplinare fornisce supporto alle vie aeree e digestive ( areo-digestive team dei paesi anglosassoni). Obiettivi: L ambulatorio, sede delle valutazioni multidisciplinari del areo-digestive team, iniziato nel 2016 ha l obiettivo di supportare i bambini CMC, che comprendono tutti i bambini oggetto di cure palliative. Su quest ambulatorio si fanno convergere tutte le situazioni meritevoli di approccio multi-disciplinare del territorio provinciali, identificate sia all interno dell ASMN sia sul territorio dell AUSL di Reggio Emilia. L ambulatorio è rivolto a bambini con patologie neurologiche (PCI, traumi, sindromi ipossico-ischemiche, microcefalia, atrofia, encefaliti, meningiti, gravi deficit cognitivi), neuromuscolari (distrifia di Duchenne, miopatia di Steinert, miopatie nemaniliche, SMA), malattie rare e genetiche (Charge, Treacher Collins, Angelman, Rett, Cornelia de Lange, Pierre Robin, Di George, Down, Bartler, Simpson-Golabi- Behnel,Wolf-Hirschhorn), sindromi endocrinologiche con disfunzione respiratoria (S. Prader-Willi), metaboliche, degenerative, broncodisplasia del prematuro, patologie con diagnosi non ancora nota. Obiettivo dell ambulatorio è anche quello di essere cerniera tra il reparto di pediatria, abituale sede di ricovero dei CMC, gli altri reparti e servizi ospedalieri che ruotano attorno a questa tipologia di pazienti e il territorio in tutte le sue componenti. Risultati: L Ambulatorio, ad un anno dalla formalizzazione dell areo-digestive team, segue numerosi pazienti (alcuni provenienti anche da province limitrofe) affetti dalle patologie identificate, che ad oggi sono 170. In esso operano i professionisti del team multidisciplinare già elencati. L ambulatorio rappresenta l interfaccia con gli altri reparti e servizi ospedalieri nelle varie fasi del percorso di cura (Neonatologia, Rianimazione, Genetica Clinica, Neuropsichiatria Infantile, Unità delle Gravi Disabilità dell Età evolutiva, Endocrinologia Pediatrica, Riabilitazione respiratori di Correggio) e con i servi territoriali (Pediatri di Libera Scelta, MMG palliativisti territoriali per la gestione dei casi in età evolutiva, Servizio Infermieristico Domiciliare-SID, Assistenti Sociali, Psicologi e Riabilitazione Respiratoria). Vi è un costante impiego delle Unità di valutazione Pediatriche-UVP, tenute a cadenza almeno mensile presso il reparto di Pediatria ASMN, per valutazione e audit dei singoli casi, con coinvolgimento di tutti gli operatori socio-sanitari coinvolti. La continuità del percorso di cura del bambino con patologia cronica viene garantita dalla applicazione di una procedura interaziendale sulla dimissione e riammissione in ospedale dei bambini cronici e con patologie complesse. Sono stati fatti numerosi eventi di formazione ECM ed è in corso una formazione accademica (Master in Cure Palliative Pediatriche) per una pediatra del team. Sono in fase di progettazione progetti di ricerca su questo tema. Allegati: #29 - Article 1.pdf #29 - Article 2.pdf 16

32 Goldhagen et al. BMC Palliative Care (2016) 15:73 DOI /s z RESEARCH ARTICLE Open Access Community-based pediatric palliative care for health related quality of life, hospital utilization and costs lessons learned from a pilot study Jeffrey Goldhagen 1, Mark Fafard 2*, Kelly Komatz 1, Terry Eason 3 and William C. Livingood 4 Abstract Background: Children with chronic complex-medical conditions comprise a small minority of children who require substantial healthcare with major implications for hospital utilization and costs in pediatrics. Community-Based Pediatric Palliative Care (CBPPC) provides a holistic approach to patient care that can improve their quality of life and lead to reduced costs of hospital care. This study's purpose was to analyze and report unpublished evaluation study results from 2007 that demonstrate the potential for CBPPC on Health Related Quality of Life (HRQoL) and hospital utilization and costs in light of the increasing national focus on the care of children with complex-medical conditions, including the Affordable Care Act's emphasis on patient-centered outcomes. Methods: A multi-method research design used primary data collected from caregivers to determine the Program's potential impact on HRQoL, and administrative data to assess the Program's potential impact on hospital utilization and costs. Caregivers (n=53) of children enrolled in the Northeast Florida CBPPC program (Community PedsCare) through the years were recruited for the Health Related Quality of Life (HRQoL) study. Children (n=48) enrolled in the Program through years were included in the utilization and cost study. Results: HRQoL was generally high, and hospital charges per child declined by $1203 for total hospital services (p=.34) and $1047 for diagnostic charges per quarter (p=0.13). Hospital length of stay decreased from 2.92 days per quarter to 1.22 days per quarter (p<.05). Conclusion: The decrease in hospital utilization and costs and the high HRQoL results indicate that CBPPC has the potential to influence important outcomes for the quality of care available for children with complex-medical conditions and their caregivers. Keywords: Pediatric palliative care, Chronic disease, Cost-effectiveness, Hospital utilization, Health related quality of life, Pilot study Background Medical care increasingly extends the lifespan of chronically ill children without curing their underlying diseases or conditions [1, 2]. The high probability that children with chronic medical conditions will endure life necessitating extensive medical care, painful procedures and surgical interventions has created a growing consensus that quality * Correspondence: Mark.Fafard@bmcjax.com 2 Baptist Health Research Institute, Baptist Health System, 836 Prudential Drive, Pavilion 6th Floor, Jacksonville, FL 32207, USA Full list of author information is available at the end of the article of life for these children and families should be a priority [3 7]. Although children with chronic complex medical conditions comprise less than 5 % of the overall child population, their impact on the healthcare system is substantial [8]. In most European countries, these children s illnesses are characterized by periods of frequent and prolonged hospitalizations [9]. In the United States, these children constitute 10 % of admissions to children s hospitals [10] and 25 % of all hospital bed days; [3] and account for approximately 40 % of total Medicaid spending on children, % of pediatric health care costs [11, 12] 2016 The Author(s). Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( applies to the data made available in this article, unless otherwise stated.

33 Goldhagen et al. BMC Palliative Care (2016) 15:73 Page 2 of 12 and 80 % of pediatric inpatient costs [11]. Nearly 50 % are dependent upon technology 10 % require feeding tubes, 7 % central venous catheters and 1 % tracheostomies [13]. Approximately 12 % are dependent on five or more medications [13, 14]. Re-admission rates for these patients have been shown to vary from 17 % to 66 % [8, 11]. On average, care for these children requires 13 different physicians from six distinct medical sub-specialties per child [15, 16]. And sadly, they represent 43 % of childhood deaths [10]. In response to the challenges of caring for these children, pediatric palliative care has emerged as an Accreditation Council for Graduate Medical Education (ACGME) boarded sub-specialty (Pediatric Hospice and Palliative Medicine) that evolved from a singular focus on end-of-life care to one emphasizing relief of suffering and quality of life [3, 6, 7, 17, 18]. Pediatric palliative care provides a continuum of interdisciplinary medical and psychosocial support services to children and families that seeks to: a) manage symptoms and relieve physical, emotional, psychological and social distress produced by medical conditions; [19, 20] b) help children with chronic and debilitating conditions, and their siblings and extended families, live as normally as possible and improve their quality of life [21], c) provide timely and accurate information to support children, families and caregivers in decision-making [22], d) empower children and parents to actively participate in decisions related to their care [23], and e) prepare the child and family for death by supporting them and their caregivers through the final months of terminal medical conditions and bereavement [17, 24]. As an important component of the palliative care continuum, community-based pediatric palliative care (CBPPC) enhances and extends the medical home model to engage children and families in their homes, schools and communities to ensure there is a holistic continuum of palliative care across primary care, hospital and community settings. CBPPC begins at the time of diagnosis (including prenatally) and continues through the life course of the child including, if the child survives, transition into adulthood [25]. CBPPC home and community-based services that focus on health literacy and communication, medical decision-making and psychosocial support and case management have the potential to improve the health related quality of life (HRQoL) of children and families and reduce healthcare utilization and costs [11, 25 27]. InlightoftherelevanceofCBPPCtothecareofchildren with chronic complex medical conditions, it has become increasingly important to quantify its impact on quality and cost of care. With respect to quality, measures of health-related quality of life (HRQoL) provide insight into the granular effect of CBPPC on people s lives. HRQoL goes beyond direct measures of population health, life expectancy and causes of death, and focuses on the impact health status has on quality of life. Measuring HRQoL over time using survey instruments: a) offers insight into the needs of the child, b) identifies the priority and extent of services that are required by the family to improve their quality of life and c) provides metrics to assess the impact of CBPPC interventions. Health care costs are more complex and challenging to evaluate over time, as actual costs and reimbursement data are difficult to obtain and analyze. In addition, despite the potential effectiveness of interventions, the child s health status may continue to decline over time resulting in an increase in the utilization of health care services and associated costs. Despite these challenges, it is more important than ever to identify and measure the metrics of quality and cost of care as they relate to the impact of CBPPC on the health and well-being of children with chronic complex medical conditions. In 2001, Community PedsCare was established by Community Hospice of Northeast Florida as a CBPPC program to provide comprehensive and compassionate palliative and end-of-life care to children with lifethreatening, complex chronic conditions and their families. The program is designed to relieve suffering, provide comfort and improve overall quality of life. It provides community-based medical, nursing, social work, child life, spiritual and volunteer care in collaboration with Wolfson Children s Hospital, Nemours Children s Clinic, the University of Florida and multiple other community agencies. Services include pain and symptom management; medical consultation; mental health, psychosocial and spiritual support and counseling; family respite; assistance with financial issues and resource development; case management and care coordination; and bereavement and grief support. Special attention is also paid to the needs of the siblings. The program serves children under the age of 21, regardless of their financial status or insurance coverage. Purpose In light of the rapid advances in the development and high global demands of pediatric palliative care [9], and the Affordable Care Act s increased emphasis on patient centered outcomes, the purpose of this manuscript is to analyze and report unpublished evaluation study results from 2007 that demonstrate the potential for positive impact of Community PedsCare s community-based palliative care program on HRQoL and hospital utilization (length of stay) and cost (facility, drugs, procedures, equipment, etc.). In addition to the outcome data, this evaluation retrospectively serves as a pilot [28] study for data collection methods, cost analysis models and HRQoL assessment tools specifically designed for

34 Goldhagen et al. BMC Palliative Care (2016) 15:73 Page 3 of 12 palliative care research. This study attempts to provide preliminary answers to two evaluation research questions concerning community-based palliative care for children with life limiting and life threatening conditions. 1) What is the impact of community-based pediatric palliative care on quality of life? 2) How does community-based pediatric palliative care impact hospital utilization and related costs? Publication of this study s results provides an opportunity to contribute to the developing evidence base that supports CBPPC contribution to HRQoL and health care cost reduction. Our expectation is that this pilot project will inform and serve as guidance for future research and policy development. Methods A multi-method research design was employed to answer the research questions. Primary data was collected from caregivers to determine the Program s potential impact on health related quality of life. Secondary data was collected for the analyses to assess the impact of the Program on hospital utilization and costs. It was hypothesized that for children enrolled in Community PedsCare, quality of life would improve for clients and care givers and hospital utilization and costs would decrease. Selection criteria included: Clients (0 18) who were enrolled in Community PedsCare (admissions range from 2002 to 2007) at the time of the study who had documented hospital admissions during the 2 years prior to and the first two quarters after enrolment in the program between Criteria for admission to PedsCare were broadly defined to include all chronic life-limiting conditions (with new diagnosis, change in status, complex situation) including children already enrolled in hospice. Parents/caregivers were invited to participate in the HRQoL study and consented through mailed letter and telephone invitations. The interviewer received consents from participants and recorded results through a paper survey. To ensure confidentiality, no names were linked to results and participants were identified by arbitrary unique codes during the analysis. Data was entered in a pass code protected secured Access database. In addition to the feasibility of obtaining related data, theoutcomesthatwereselectedforthehrqolinstrument, as well as the framework for the evaluation of this pilot study were based on the logic model below (see Fig. 1). Health related quality of life instrument development The HRQoL instrument was developed by Community PedsCare and intended to pilot the collection of primary data from patients and caregivers focused on health related quality of life issues that could potentially be impacted by Community PedsCare palliative care services. Fig. 1 Evaluation logic model pediatric palliative care

35 Goldhagen et al. BMC Palliative Care (2016) 15:73 Page 4 of 12 Development of the instrument involved the following steps. 1. The scientific literature on HRQoL was reviewed and constructs from the literature defined. Although pre-existing validated HRQoL tools exist in Palliative Care, it was the intention to pilot a tool designed for Community Based Pediatric Palliative Care, particularly for Community PedsCare. 2. In-depth interviews of Community PedsCare staff and primary healthcare providers were conducted to obtain their perceptions of current and priority Community PedsCare services and desired Program outcomes. 3. HRQoL constructs/themes were abstracted from inperson interviews of Community PedsCare staff and primary care physicians. 4. Constructs from the literature were synthesized with the constructs that emerged from the local interviews. 5. The HRQoL instrument was refined and validated through a local expert panel review. The scientific literature on HRQoL for pediatrics is extensive including articles on HRQoL developed and/or tested for specific conditions [29, 30], more generic HRQoLs for children in general [30 32], and pediatric HRQoL adapted from adult instruments [33]. These instruments tend to have similar constructs such as physical, social, emotional and overall functioning and tend to rely on child self-report and parental proxy report. Notably, these instruments tend to focus on the child s HRQoL.The in-depth interviews that were used to adapt HRQoL concepts to Palliative Care revealed a holistic or social ecological [34] approach to care that viewed the whole family as receiving supportive care. Consequently, the instrument developed for this population utilized concepts of HRQoL found in over 30 years of literature, but in this case, specifically adapted to the unique focus of the palliative care program, the parents/caregivers [29 35]. The resulting HRQoL survey instrument was comprised of two parts. Part I measured the average number of days within the past 30 days that the respondents experienced conditions categorized under three constructs: general emotional health, respite care and activity limitation. The part had 7 items organized under 3 constructs. Part II was constructed to assess performance of the health care system and perceptions of parents, guardians and children related to their psychosocial and emotional health on an ordinal scale from 1 to 5. A total of seventeen (17) items were included under 5 constructs: decision-making, social support, interaction and communication, access to resources and child health. Data collection and analysis Family/caregivers were invited to participate in the HRQoL study and consented through mailed letter and phone invitations. A contracted evaluation interviewer received verbal consents from participants and recorded results through a paper survey. To ensure confidentiality, no names were linked to results and participants were identified by arbitrary unique codes. Surveys were administered in the later part of HRQoL data was collected on the following Community PedsCare services provided to children and families: pain and symptom management; medical consultation; mental health, psychosocial and spiritual support and counseling; family respite; assistance with financial issues and provision of medical supplies; case management; bereavement and grief support; and sibling support, including summer camp programs. Data was entered in a pass code protected access secured database, created and managed by the Evaluation staff person. Statistical Packages for the Social Sciences (SPSS) and Excel software were used to perform descriptive analyses of results obtained from the HRQoL survey. Frequency and percentages of responses from the survey were calculated. Additional analyses were performed to assess the effects of length of Community PedsCare enrollment on HRQoL responses. A one-way analysis of variance (ANOVA) procedure was used to identify statistically significant differences in scores on the HRQoL for different lengths of Program enrollment. Regression analysis was performed to assess the relationship of HRQoL scores to period of enrollment. Hospital utilization and cost study A secondary data analysis design was used to evaluate the impact of the Program on hospital utilization and costs. This outcome evaluation consists of two components: 1) a retrospective study of the utilization (length of stay) and costs (facility, laboratory, pharmacy, procedures, imaging, etc.) of services pre- and post-enrollment of children into the Program, and 2) comparison of hospital utilization and costs for Community PedsCare clients to utilization and costs prior to enrollment. The retrospective study involved utilization and costs. Cost were categorized as follows: room and board, medical equipment and supplies, diagnostic costs, drug therapy, physical therapy, subspecialty institutional departments, pharmacy, dialysis, gastrointestinal services, and increment nursing. A purposeful sample of Community PedsCare clients who had documented hospital admissions during the 2 years prior to and the first two quarters after enrollment in the Program between the years 2002 to 2006 (n =48) were included in the study. Because the client was referred based on referral criteria, the sample is more aligned with a purposive sample rather than a random sample of children. Following Institutional Review Board (IRB) approvals, electronic data on patient conditions, types of care and costs were requested and obtained from Community

36 Goldhagen et al. BMC Palliative Care (2016) 15:73 Page 5 of 12 Hospice of Northeast Florida Information Technology Department (Community PedsCare) and Baptist Health Information Services Department (Wolfson Children s Hospital). The primary variables of concern included in the electronic data were: a) International Statistical Classification of Diseases (ICD 9 codes) of Community PedsCare clients, b) demographic data such as age, gender, etc., c) length of stay in the hospital, and d) hospital health care services and service related costs. Quarterly sums for hospital utilization and costs (facility, lab, pharmacy, procedures, imaging, etc.) were calculated per child for periods prior to and after enrollment into the Program. The quarterly means for utilization and costs prior to enrollment in Community PedsCare were compared to the quarterly means for post enrollment periods. In order to ensure a comparable time frame for costs and utilization among clients who enrolled at various times, quarterly means of the variables of concern were only taken from Quarters 3 and 4 of 2005 and from Quarters 1 to 4 from 2006 before and after enrollment. The use of quarters provided large enough expenditures to be statistically reliable, and facilitate comparable time periods. SPSS for Windows, release 15.0, Statistical Analysis System (SAS) Version 8.0, and Microsoft Office Excel 2003 software were utilized to test the primary hypotheses that Community PedsCare participation will be associated with decreases in utilization (length of stay in days) and hospital costs (facility and healthcare services charges). Datasets were linked and stripped of personal identifiers for confidentiality during analysis through SAS programming. Statistical significance was defined as differences at the.05 level, and for marginal statistically significant differences at the.20 level (important due to challenge of achieving statistical significance and avoiding Type II Error with very small sample). A paired T-test procedure was used to test for statistically significant differences in quarterly averaged hospital utilization and costs prior to and after enrollment into Community PedsCare among palliative care clients only. Results Health related quality of life Fifty-three (n = 53) parents/caregivers participated in the HRQoL study. Participant demographics are presented in Table 1. Sixty-two percent (62 %) of participants in the HRQoL were White, 19 % were Black, and 79 % and 21 % of clients ages ranged from 0 12 years and years respectively. The majority of clients (66 %) had been enrolled in the Program for more than 6 months. Overall, parents-caregivers tended to score high on HRQoL ordinal (1 5) and interval (0 30 days) scales for the HRQoL constructs/items (i.e. decision-making, Table 1 Demographics of Community PedsCare Pediatric Palliative Care Clients. Health Related Quality of Life Study, ( ) Client characteristics (n = 53) Client frequency Percent Days in Pediatric Palliative Care: < 30 days % 30 to 90 days % 91 to 180 days % 181 to 270 days % 271 to 365 days % > 365 days % Gender: Female % Male % Race: Black % Hispanic % White % Native American % Unknown % Age Group: 0 4 years % 5 12 years % years % years % Family Caregiver Type of Pediatric Client: Father % Foster Parent % Grand Father % Grand Mother % Legal Guardian % Mother % Other % Data Source: Community Hospice of Northeast Florida Prepared by the Institute for Health, Policy and Evaluation Research social support, interaction and communication, access to resources, child health). Table 2 displays results for all of the HRQoL constructs and related items. Participants reported excellent results on issues related to their capacity (self-efficacy) to care for their children, e.g., decision-making, meeting their child s needs and managing their child s health. For example, parents reported most or all the time: The ability to make good decisions concerning health care options for their child (94 %), and confidence in their ability to manage their child s health (94 %).

37 Goldhagen et al. BMC Palliative Care (2016) 15:73 Page 6 of 12 Table 2 Health related quality of life survey results Part I. HRQoL Constructs & Items General Emotional Health How many days during the past 30 days have you felt Responses by Range of Days 0 to 5 days 6 to 10 days 11 to 15 days 16 to 20 days 21 to 25 days 26 to 30 days 1. stressed about your child s health 18 (34 %) 11 (20.8 %) 5 (9.4 %) 2 (3.8 %) 0 (0 %) 17 (32.1 %) 2. scared about your child s health 37 (69.8 %) 6 (11.3 %) 1 (1.9 %) 0 (0 %) 0 (0 %) 9 (17 %) 3. sad about your child s health 25 (47.2 %) 8 (15.1 %) 3 (5.7 %) 2 (3.8 %) 0 (0 %) 15 (28.3 %) 4. angry about your child s health 45 (84.9 %) 3 (5.7 %) 2 (3.8 %) 0 (0 %) 0 (0 %) 3 (5.7 %) 5. disappointed with my results when 46 (86.8 %) 3 (5.7 %) 2 (3.8 %) 0 (0 %) 0 (0 %) 2 (3.8 %) Respite Care How many days in the last 30 days 6. Was there someone to relieve you 25 (47.2 %) 7 (13.2 %) 2 (3.8 %) 1 (1.9 %) 0 (0 %) 18 (34.0 %) of your role of taking care of your child? Activity Limitation How many days during the past 30 days.. 7. Were you not able to do your usual activities because of stress, depression, and other emotional problems 42 (79.2 %) 4 (7.5 %) 4 (7.5 %) 0 (0 %) 0 (0 %) 3 (5.7 %) Part II. Ordinal Scaled Responses HRQoL Constructs and Items None of the time A little of the time Sometimes Most of the time All the time Decision making (1) (2) (3) (4) (5) 1. I am able to make good decisions concerning 0 (0 %) 0 (0 %) 1 (1.9 %) 13 (24.5 %) 39 (73.6 %) healthcare options for my child 2. I am able to find a way to make sure that my 0 (0 %) 0 (0 %) 5 (9.4 %) 13 (24.5 %) 35 (66.0 %) child has healthcare specific to their needs 3. I receive correct information about my child s 0 (0 %) 1 (1.9 %) 10 (18.9 %) 11 (20.8 %) 31 (58.5 %) condition or illness 4. I feel confident in my decision to manage 0 (0 %) 0 (0 %) 3 (5.7 %) 14 (26.4 %) 36 (67.9 %) my child s health 5. I am satisfied with decisions made for my 0 (0 %) 1 (1.9 %) 8 (15.1 %) 19 (35.8 %) 25 (47.2 %) child s healthcare needs after a doctor s visit Social Support 6. I have someone I can talk to about my fears 1 (1.9 %) 2 (3.8 %) 7 (13.2 %) 5 (9.4 %) 38 (71.7 %) concerning my child s health Interaction/Communication 7. I can explain my child s need to my primary 0 (0 %) 2 (3.8 %) 4 (7.5 %) 11 (20.8 %) 36 (67.9 %) healthcare provider 8. I can understand the needs of my child from 0 (0 %) 0 (0 %) 4 (7.5 %) 16 (30.2 %) 33 (62.3 %) my primary healthcare provider 9. I am able to ask questions I may have about 0 (0 %) 0 (0 %) 3 (5.7 %) 7 (13.2 %) 43 (81.1 %) my child s healthcare 10. My child has someone they can express themselves to when they are sad, angry, afraid, etc 9 (17.0 %) 0 (0 %) 3 (5.7 %) 4 (7.5 %) 37 (69.8 %) Access to Resources I am able to obtain or have assistance in obtaining the following: 11. Medicine 1 (1.9 %) 0 (0 %) 2 (3.8 %) 6 (11.3 %) 44 (83.0 %) 12. Medical equipment 0 (0 %) 0 (0 %) 6 (11.3 %) 13 (24.5 %) 34 (64.2 %) 13. Housing and Utilities 4 (7.5 %) 0 (0 %) 3 (5.7 %) 4 (7.5 %) 42 (79.2 %)

38 Goldhagen et al. BMC Palliative Care (2016) 15:73 Page 7 of 12 Table 2 Health related quality of life survey results (Continued) Child Health 14. I am able to understand the needs of my child 0 (0 %) 0 (0 %) 3 (5.7 %) 16 (30.2 %) 34 (64.2 %) 15. My child understands their condition 29 (54.7 %) 2 (3.8 %) 7 (13.2 %) 3 (5.7 %) 12 (22.6 %) 16. My child spends quality time with family and friends 1 (1.9 %) 0 (0 %) 4 (7.5 %) 5 (9.4 %) 43 (81.1 %) 17. My child is treated with dignity while receiving healthcare services 0 (0 %) 0 (0 %) 1 (1.9 %) 4 (7.5 %) 48 (90.6 %) Being able to ask questions to their health care providers about their child s healthcare needs (94 %), and understanding their responses (93 %). Being able to obtain medicine required for their child s health needs (94 %). Understanding the needs of their child (94 %), providing their child quality time with family and friends (91 %), and receiving ethical healthcare (98 %). Parents reported that within the last 30 days, perceptions of: a) impaired emotional health averaged 7 days, b) activity limitations due to impaired emotional health averaged 8 days, and c) relief from care giving averaged 13 days. Parental perceptions related to externally controlled issues, in particular physician services and health system functions were also rated highly, but lower than the internal locus of control items. For instance, a substantial number of parents reported that only sometimes, a little of the time or none of the time, they: Were able to find a way to make sure that their child had health care specific to their needs (9.4 %); received correct information about their child s condition or illness (21 %); and were satisfied with decisions made by their child s doctor (17 %). Have someone to talk to about fears concerning their child (19 %). Can explain their child s needs to their primary healthcare provider (11 %). Are able to obtain or have assistance in obtaining medical equipment (11 %) and housing and utilities (13 %). With respect to children themselves, parents reported some, a little or none of the time that their children: a) had someone with whom they could express themselves when they are sad, angry, afraid, etc. (23 %), and b) understand their condition (72 %). This could be attributed to the proportion of children less than 5 years of age (43.4 %) and children with developmental and cognitive impairments. Additional analysis using Analysis of Variance (ANOVA) was conducted to assess the relationship of length of enrollment in PedsCare to the HRQoL responses. The analysis identified significant (p.05) differences in reported days of impaired emotional health due to fear (p =.01) and differences in reported days of activity limitation due to emotional problems (p =.01) associated with the length of enrollment. An additional regression analysis identified statistically significant linear relationship for the length of enrollment to HRQoL scores related to reduced fear (p =.02) and reduced activity limitations (p =.02) with the regression charts showing responses for days of limitation in a month (30 day period) for children enrolled over a continuum or periods from zero to almost 6 years of the program (approximately a 1500 day maximum enrollment period). [See Figs. 2 and 3]. Utilization and cost Children enrolled in Community PedsCare through the years 2000 and 2006 were eligible for inclusion in the utilization and cost study. The illnesses and conditions of children enrolled in the Program during these years are presented in Fig. 4. The total cost of the 1440 regional hospital admissions ( ) of children Reported days of activity limitation y = x R 2 = P-Value= ,000 1, ,000 * Possible scores range from 1 to 5, with higher scores indicating better responses ** The difference (b) was estimated by a linear regression analysis ^Significant value is <.05 Days in Community PedsCare Fig. 2 Relationship of PedsCare period of enrollment to activity limitation due to adverse emotional health 2,500

39 Goldhagen et al. BMC Palliative Care (2016) 15:73 Page 8 of 12 Reported Days of Activity Limitation y = x R 2 = P-Value= ,000 1,500 2,000 2,500 Days in Community PedsCare Fig. 3 Relationship of PedsCare period of enrollment to days of feeling scared about child s health (enrolled and not enrolled in the Community PedsCare program) with the diagnoses of children in the Community PedsCare program was $56,626,703. Table 3 presents the demographics of Community PedsCare clients (n = 48) included in the hospital utilization and cost studies. From 2000 to 2006, 58 % of Community PedsCare palliative care clients utilized hospital services before and after enrollment in the Program, and 42 % were not hospitalized while in the Program. The majority of clients utilizing inpatient hospital services was White (67 %) and had the following conditions: Congenital Anomalies (28 %), Nervous Organs/Sense Organs (27 %) and Neoplasms (13 %). See Table 3. Results from the utilization analysis show statistically significant differences for Community PedsCare patients who utilized hospital services during the pre-enrollment quarters compared to the quarters following their enrollment. In order to ensure a comparable time frame for costs and utilization, quarterly means of the variables of concern were only taken from Quarters 3 and 4 of 2005 and from Quarters 1 to 4 from 2006 before and after enrollment. Table 4 reveals that prior to enrollment, Community PedsCare clients length of stay in the hospital averaged 2.92 days per quarter. After enrollment in the Program, client length of stay in the hospital significantly decreased to an average of 1.22 days per quarter (p value <.05). Following enrollment in the Program, hospital charges declined by $1203 for total charges per quarter for hospital services and $1047 for diagnostic charges per quarter. The decrease in diagnostic charges was marginally significant (p = 0.13). Although the total charges decreased, the decline did not reach statistical significance (p = 0.34). Discussion The Medical Home model was pioneered five decades ago by the American Academy of Pediatrics to improve the care of children with special health care needs [36, 37]. Subsequent work by Cal Sia, M.D. and others established the principles of practice and policies that have advanced the model to become the Patient- Centered Medical Home embraced by all primary care specialties [36, 38]. Concurrent development of the practice of Community Pediatrics by Robert Haggerty, M.D. established the importance of engaging community resources to Nervous System and Sense Organ 27% Blood/Blood Forming 2% Digestive System 2% Central Urinary System 2% Perinatall Period Conditions 2% Circulatory System 6% Injury Poisoning 6% Symptoms, Signs, III 9% Endocrine Nutritional Metabolism 4% Congenital Anomalies 27% N=48 Neoplasms 13% Fig. 4 Diagnosis Group of Parent/Guardian s child enrolled in pediatric palliative care while utilizing hospital services ( )

40 Goldhagen et al. BMC Palliative Care (2016) 15:73 Page 9 of 12 Table 3 Demographics of Community PedsCare clients* ( ). Cost and Utilization Study Client characteristics (n = 48) Client frequency Percent Client palliative care enrollment status: Number of clients enrolled in Community PedsCare who utilized the hospital post enrollment % Number of clients enrolled in Community PedsCare who were not hospitalized post enrollment % Days in the program as of 7/1/07: % > % Gender: Female % Male % Race: Black 9 19 % White % Hispanic 6 13 % Other 1 2 % Data Source: Community Hospice of Northeast Florida Prepared by the Institute for Health, Policy and Evaluation Research expand the services available to primary care providers required by their patients in particular children with special health care needs [39]. Despite the decades-old development of these evidence-based practices, the practice of pediatric hospice and palliative medicine and communitybased pediatric palliative care are less than a decade old and relatively few communities have access to these services. In addition, palliative care services remains unreimbursed severely limiting the expansion of these services [40]. Thus, it is imperative that an evidence-base be generated to validate the effectiveness of community-based palliative care to improve the health and well-being of children with chronic complex medical conditions and decrease the cost of care as a complement to the patientcentered medical home. Toward this end, multiple regional and national efforts are unfolding to improve quality of care of children with chronic complex-medical conditions, driven primarily by efforts to decrease the cost of their care [41]. Although many of these endeavors focus on developing enhanced patient-centered medical homes and more effective hospital-based care for children with complex-medical conditions, few if any of these initiatives include communitybased palliative care as a core element of their medical home strategies. This is in part due to the failure of private sector insurance to cover community-based palliative care services. Several states have Medicaid waivers that cover some of these in-home services, but reimbursements are meager and services limited and there have been few examples of such programs in the private sector. The Affordable Care Act provides an opportunity through its Concurrent Care program to provide concurrent curative and community-based hospice care to children, but children must be eligible for hospice in order to participate [42]. The decrease in hospital utilization and costs for children post enrollment in the Community PedsCare program, the positive perceptions of health related quality of life related to enrollment in Community PedsCare, and the relationship between length of enrollment in Community PedsCare and quality of life for several HRQoL domains indicate that community-based pediatric palliative care could play a defining role in expanding the structure of patient-centered medical homes, the holistic care of children with complex medical conditions, and the function of pediatric health care systems in response to the increasing number of children with chronic complex medical conditions [25]. Given that it is reasonable to expect that the health status of children in the Community PedsCare Program declined over time, the Program s potential impact on decreasing hospital utilization and cost post-enrollment in the Program may be even more significant. These findings, and the tendency for caregivers to report high HRQoL scores, could inform insurance companies and other payers of the potential benefits of expanding coverage to include community-based pediatric palliative care services. Moreover, these findings indicate the potential value of empowerment and the quality community-based support in care planning process [43]. Demonstrating potential for improved quality of life and decreased costs of Table 4 Comparison of hospital utilization and costs: before and after pediatric palliative care, PedsCare clients only Community PedsCare pediatric client Before pediatric palliative care After pediatric palliative care P-value* N =40 N =40 Cost and utilization findings Mean Standard error Mean Standard error Length of Stay (Days/Quarter) Total Diagnostic Charges/Quarter $2, $1, Total Charges/Quarter $7, , $6, , *Paired One tailed T-test -Before and After Community PedsCare Data Source: Baptist Health System: Baptist Medical Center Downtown Prepared by Duval County Health Department, Institute for Health, Policy, and Evaluation Research

41 Goldhagen et al. BMC Palliative Care (2016) 15:73 Page 10 of 12 care, as reported in this study, will be necessary to legitimize and catalyze comprehensive public and private sector third-party reimbursement for community-based palliative care. Strengths, limitations, and lessons learned Important lessons were learned about the feasibility and limitations of several approaches to the research methods used in this initial study, which can inform development of future research. The small sample size was a major factor in limiting conclusions. Future impact assessments of pediatric palliative care will be substantially enhanced through longitudinal studies at multiple sites that could include larger samples and samples of children with very similar conditions. Comparison of hospital utilization and cost pre- and post-enrollment in a pediatric palliative care program is a viable approach to determining impact, though the disease course will negatively impact cost savings, as presumably the child s clinical status will worsen over time. Any positive impact on utilization and cost, and other illness and condition-related system of care variables, will be somewhat moderated by the condition s course. Even a modestly positive impact should therefore be interpreted as a significant gain. ICD 9 codes and other disease classifications, e.g. Clinical Risk Groups (CRGs) alone are not adequate for identifying appropriate comparison groups for children enrolled in pediatric palliative care programs, as these codes do not adequately address severity of illness, a major factor in service utilization and cost. Presumably the most ill children within a coding group will more likely be enrolled in a palliative care program and/or receiving palliative care services. Future studies may need to consider implementation of additional resources that identify the most common, specific diagnoses found in pediatric palliative care [44]. Comparing children receiving palliative care services with those who are not, and/or comparing those enrolled and not enrolled in palliative care programs may not result in the comparison of comparable groups. An additional approach to clarifying severity of illness is necessary to identify comparison groups to assess the impact of palliative care services and programs. Dose effect (the amount of time after enrollment required to produce an effect) may need to be determined before palliative care service and program impact can be fully assessed. Future impact assessments, in particular those related to HRQoL domains, should involve longitudinal data collection beginning at the time of enrollment and at standardized periods thereafter to assess the impact of palliative care services and programs. This evaluation focused only on hospital utilization and costs. The impact of pediatric palliative care services and programs on other system-related variables, e.g. the number of hospitalizations over time; and emergency department, outpatient, subspecialty, etc. utilization and costs represent important areas for future research. This study did not provide a cost-benefit analysis. The potential benefits of the program that were demonstrated by this study were not analyzed related to the costs of providing the services. The HRQoL assessment tool was an initial effort to quantify relevant health related quality of life factors. It primarily reflected HRQoL benefits from the perspectives of program professionals. The instrument requires more extensive validation and ongoing refinement to increase discrimination power and address the perspectives of family members. HRQoL questions focused on children must be analyzed in the context of the child s chronological age and developmental and cognitive capacities. Pre and post enrollment assessment of HRQoL will also need to be conducted to more accurately assess program impact over time. Though the sample size was small, the results of this study show promising results. Future studies will require larger sample sizes, a longitudinal approach, consideration of the effects of length of enrollment on outcomes and other methodological refinements. Pediatric palliative care by its nature is responsive to the perceived needs and concerns of patients and families. As such, it can inform ACA catalyzed health service research, system reforms and policy development to advance the relevance of the Patient Centered Medical Home to the care of children with chronic complex medical conditions [45]. Despite the global development of pediatric palliative care programs, only a minority of children in need receive this type of care [9]. In order to expand the practice of pediatric palliative care, it is imperative that future research generates an evidence base that informs the: a) care and provision of services for children with chronic complex medical conditions, b) structure, function and finance of pediatric health care systems that advance the pediatric palliative care continuum, including its integration into the patient-centered medical home model, and c) curricula and pedagogy for the interdisciplinary training of child health professionals in palliative care.

42 Goldhagen et al. BMC Palliative Care (2016) 15:73 Page 11 of 12 Conclusion This pilot study demonstrates the potential impact of CBPPC on improved HRQoL and decreased cost of care. The HRQoL results showed parents-caregivers reported overall positive perceptions with impaired emotional health, decision-making, social support, interaction and communication, child health and self-efficacy in caring for their children, with higher HRQoL scores associated with longer periods of enrollment. The utilization analysis showed reductions in utilization of hospital services for Community PedsCare patients during the preenrollment quarters compared to the quarters following their enrollment. This evaluation was among the first and remains among the few in the US to assess the impact of community-based pediatric palliative care on health related quality of life and hospital utilization and costs [7]. This pilot study yielded promising results and suggests the need for further investigation. Additional file Additional file 1: Community PedsCare A Summative Evaluation of a Pediatric Palliative Care Program. Final Report. (PDF kb) Abbreviations ACGME, Accreditation Council for Graduate Medical Education; ANOVA, Analysis of Variance; CBPPC, Community Based Pediatric Palliative Care; CRG, Clinical Risk Group; HRQoL, Health Related Quality of Life; ICD, International Classification of Disease; IRB, Institutional Review Board, SAS, Statistical Analysis System; SPSS, Statistical Packages for the Social Sciences Acknowledgements This evaluation study was conducted through a contract (Agreement No. AGR ) to the Duval County Health Department, Institute for Health, Policy, and Evaluation Research from the Baptist Health System Foundation, Inc., funded by a grant from the Jesse Ball DuPont Foundation (Grant No ). The grant funds also provided support for Community PedsCare, the pediatric palliative and hospice program, operated by Community Hospice of Northeast Florida, Inc. Medical services provided by The University of Florida College of Medicine Jacksonville were also supported by this grant. This evaluation study could not have been completed without support from and collaboration with Community Hospice of Northeast Florida, Wolfson Children shospital,nemours Children s Specialty Care, and the University of Florida College of Medicine- Jacksonville. The authors would like to thank Kimberly Pierce for her substantial contributions to the descriptive analysis, reporting and result components of this paper. Funding Jesse Ball DuPont Foundation (Grant No ). Availability of data and materials The final report, Community PedsCare A Summative Evaluation of a Pediatric Palliative Care Program has been provide as Additional file 1. Authors contributions This is the original work of the following authors: Jeffrey Goldhagen, M.D., MPH, Mark Fafard, MPH, Kelly Komatz, M.D., MPH, Terry Eason, RN, MPH, and William C Livingood, Ph.D. JG introduced the study and participated in the study design and coordination, and helped draft the manuscript. MF participated in critically revising the manuscript, data interpretation and helped draft the manuscript. KK participated in the acquisition of data, data analysis and drafting the manuscript. TE participated in the acquisition of data, data analysis and drafting the manuscript. WL introduced the study and participated in the design, coordination and statistical analysis, and helped draft the manuscript. All authors reviewed and approved the final draft of the manuscript. Competing interests All authors have approved the manuscript and it has not been published elsewhere. The authors have no conflicts of interest to declare related to the study described in the manuscript. The authors have no financial or non-financial competing interest to declare related to the study described in the manuscript. The manuscript is not being considered for publication in any other journal. Consent to publish The manuscript contains no individual details, images or videos, therefore Consent to Publish was not applicable. Ethics approval and consent to participate Human subjects review and approval for the evaluation study that yielded the described results, including the consenting process, was granted by the Institutional Review Committee of Baptist Medical Center (2007) and the Institutional Review Board, University of Florida (2007). The Florida Department of Health also reviewed the protocol (2007) and determined that the study was Program Evaluation - Activity does not involve research, since the project was not designed to contribute to generalizable knowledge. Availability of supporting data The full report with additional details is available upon request. Author details 1 Division of Community and Societal Pediatrics, Department of Pediatrics, UF College of Medicine Jacksonville, 841 Prudential Drive, Suite 1330 m, Jacksonville, FL 32207, USA. 2 Baptist Health Research Institute, Baptist Health System, 836 Prudential Drive, Pavilion 6th Floor, Jacksonville, FL 32207, USA. 3 Community PedsCare, Community Hospice of Northeast Florida, 4266 Sunbeam Rd., Jacksonville, FL 32257, USA. 4 Center for Health Equity and Quality Research, UF College of Medicine-Jacksonville, 580 W. 8th St., Tower II, Room 6015, Jacksonville, FL 32209, USA. Received: 7 March 2016 Accepted: 22 July 2016 References 1. Benini F, Spizzichino M, Trapanotto M, Ferrante A. Pediatric palliative care. Ital J Pediatr. 2008;34(1): Contro N, Larson J, Scofield S, Sourkes B. Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med. 2002;156: Bogetz JF, Ullrich CK, Berry JG. Pediatric hospital care for children with life-threatening illness and the role of palliative care. Pediatr Clin North Am. 2014;61(4): doi: /j.pcl Gothelf D, Cohen IJ. Pediatric palliative care. N Engl J Med. 2004;351(3): Pierucci RL, Kirby RS, Leuthner SR. End of life care for neonates and infants: The experience and effects of a palliative care consultation service. Pediatrics. 2001;108(3): Postier A, Chrastek J, Nugent S, Osenga K, Friedrichsdorf SJ. Exposure to home-based pediatric palliative and hospice care and its impact on hospital and emergency care charges at a single institution. J Palliat Med. 2014;17(2): doi: /jpm Conte T, Mitton C, Trenaman LM, Chavoshi N, Siden H. Effect of pediatric palliative care programs on health care resource utilization and costs among children with life-threatening conditions: a systematic review of comparative studies. CMAJ Open. 2015;3(1):E doi: /cmajo Cohen E, Kuo DZ, Agrawal R, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011; 127(3): doi: /peds Fondiazone Maruzza Lefebvre D Ovidio Onlus. EAPC Taskforce for Palliative Care in Children. Palliative care for infants, children and young people: The facts Available at DeiV2yhtOZA%3d. Accessed 24 May Simon TD, Berry J, Feudtner C, et al. Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics. 2010;126(4): doi: /peds

43 Goldhagen et al. BMC Palliative Care (2016) 15:73 Page 12 of Berry JG, Hall M, Neff J, et al. Children with medical complexity and medicaid: spending and cost savings. Health Aff (Millwood). 2014;33(12): doi: /hlthaff Mosquera RA, Avritscher EB, Samuels CL, et al. Effect of an enhanced medical home on serious illness and cost of care among high-risk children with chronic illness: a randomized clinical trial. JAMA. 2014;312(24): doi: /jama Bogetz JF, Schroeder AR, Bergman DA, Cohen HJ, Sourkes B. Palliative care is critical to the changing face of child mortality and morbidity in the United States. Clin Pediatr (Phila). 2014;53(11): doi: / Feudtner C, Villareale NL, Morray B, Sharp V, Hays RM, Neff JM. Technologydependency among patients discharged from a children s hospital: a retrospective cohort study. BMC Pediatr. 2005;5(1): Lindley LC, Mixer SJ, Cozad MJ. The effect of pediatric knowledge on hospice care costs. Am J Hosp Palliat Care. 2014;31(3): doi: / Cohen E, Berry JG, Camacho X, Anderson G, Wodchis W, Guttmann A. Patterns and costs of health care use of children with medical complexity. Pediatrics. 2012;130(6):e doi: /peds Himelstein BP. Palliative care for infants, children, adolescents, and their families. J Palliat Med. 2006;9(1): von Gunten C, Ferris D, D Antuono R, Emanuel L. Recommendations to improve end-of-life care through regulatory change in U.S. health care financing. J Palliat Med. 2004;5(1): EAPC Taskforce for Palliative Care in Children. IMPaCCT: Standards for paediatric palliative care in europe. Eur J Palliat Care. 2007;14(3): Schwantes S, O Brien HW. Pediatric palliative care for children with complex chronic medical conditions. Pediatr Clin North Am. 2014;61(4): doi: /j.pcl Gans D, Kominski GF, Roby DH, et al. Better outcomes, lower costs: palliative care program reduces stress, costs of care for children with life-threatening conditions. Policy Brief UCLA Cent Health Policy Res. 2012;(PB2012-3)(PB2012-3): Carroll KW, Mollen CJ, Aldridge S, Hexem KR, Feudtner C. Influences on decision making identified by parents of children receiving pediatric palliative care. AJOB Prim Res. 2012;3(1): Classen CF. Pediatric palliative care - the role of the patient s family. World J Clin Pediatr. 2012;1(3):13 9. doi: /wjcp.v1.i Chochinov H, Cann B. Interventions to enhance the spiritual aspects of dying. J Palliat Med. 2005;8(Supp 1):S Kaye EC, Rubenstein J, Levine D, Baker JN, Dabbs D, Friebert SE. Pediatric palliative care in the community. CA Cancer J Clin. 2015;65(4): doi: /caac Gans D, Hadler M, Chen X, et al. Impact of a pediatric palliative care program on the caregiver experience. J Hosp Palliat Nurs. 2015;17(6): Groh G, Feddersen B, Fuhrer M, Borasio GD. Specialized home palliative care for adults and children: differences and similarities. J Palliat Med. 2014;17(7): doi: /jpm Arain M, Campbell M, Cooper C, Lancaster G. What is a pilot or feasibility study? A review of current practice and editorial policy. BMC Med Res Methodol. 2010;16:10(67). 29. Vederhus B, Markestad T, Eide G, Graue M, Halvorsen T. Health related quality of life after extremely preterm birth: A matched controlled cohort study. Health Qual Life Outcomes. 2010;8(53): Seid M, Limbers C, Driscoll K, Opipari-Arrigan L, Gelhard L, Varni J. Reliability, validity, and responsiveness of the pediatric quality of life inventory (PedsQL) generic core scales and asthma symptoms scale in vulnerable children with asthma. J Asthma. 2010;47(2): Varni J, Seid M, Rode C. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37(2): Seid M, Varni J, Kurtin P. Measuring quality of care for vulnerable children: challenges and conceptualization of a pediatric outcome measure of quality. Am J Med Qual. 2000;15(4): Villalonga-Olives E, Kawachi I, Almansa J, et al. Pediatric health-related quality of life: a structural equation modeling approach. PLoS One. 2014;21:9(11). 34. McLeroy K, Bibeau D, Steckler A, Glanz K. An ecological perspective on health promotion programs. Health Educ Q. 1988;15(4): Varni J, Seid M, Kurtin P. PedsQL 4.0: Reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;39(8): Robert Grahm Center. The patient centered medical home: History, seven core features,evidence and transformational change. Washington, DC American Academy of Pediatrics. Children and the medical home. Available at: documents/acamedicalhomefactsheet.pdf. Accessed 24 May American Academy of Pediatrics. AAP member spotlight: Calvin C.J. sia, MD, FAAP Available at Accessed 24 May Haggerty RJ, Aligne AC. Community pediatrics: The Rochester Story. Pediatrics. 2005;115(Supplement 3): Catalyst Center. Financing pediatric palliative and hospice care programs: An important but underutilized service for children with life-limiting conditions Center for medicare and medicaid innovation: Coordinating all resources effectively (CARE) for children with medical complexity award. Award number 1C1CMS National Hospice and Palliative Care Organization. Pediatric concurrent care Available at: Continuum_Briefing.pdf. Accessed 24 May Klingler C, in der Schmitten J, Marckmann G. Does facilitated advance care planning reduce the costs of care near the end of life? systematic review and ethical considerations. Palliat Med. 2015;30(5): Hain R, Devins M, Hastings R, Noyes J. Paediatric palliative care: Development and pilot study of a directory of life limiting conditions. BMC Palliative Care. 2013;12(43): Society for Public Heatlh Education. Issue brief: Opportunities and challenges for health education specialists. 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44 Pediatric Palliative Care and Inpatient Hospital Costs: A Longitudinal Cohort Study Andrew G. Smith, MD a, Seth Andrews, MBA b, Susan L. Bratton, MD, MPH a, Joan Sheetz, MD a, Chris Feudtner, MD, PhD, MPH c,d,e, Wenjun Zhong, PhD c, Christopher G. Maloney, MD, PhD a abstract BACKGROUND: Pediatric palliative care (PPC) improves the quality of life for children with life-limiting conditions, but the cost of care associated with PPC has not been quantified. This study examined the association between inpatient cost and receipt of PPC among high-cost inpatients. METHODS: The 10% most costly inpatients treated at a children s hospital in 2010 were studied, and factors associated with receipt of PPC were determined. Among patients dying during 2010, we compared 2010 inpatient costs between PPC recipients and nonrecipients. Inpatient costs during the 2-year follow up period between PPC recipients and nonrecipients were also compared. Patients were analyzed in 2 groups: those who died and those who survived the 2-year follow-up. RESULTS: Of 902 patients, 86 (10%) received PPC. Technology dependence, older age, multiple chronic conditions, PICU admission, and death in 2010 were independently associated with receipt of PPC. PPC recipients had increased inpatient costs compared with nonrecipients during Among patients who died during the 2-year follow-up, PPC recipients had significantly lower inpatient costs. Among survivors, PPC recipients had greater inpatient costs. When controlling for patient complexity, differences in inpatient costs were not significant. CONCLUSIONS: The relationship of PPC to inpatient costs is complex. PPC seems to lower costs among patients approaching death. Patients selectively referred to PPC who survive most often do so with chronic serious illnesses that predispose them to remain lifelong highresource utilizers. WHAT S KNOWN ON THIS SUBJECT: Pediatric palliative care (PPC) improves the quality of life for children with life-limiting illness and their families. The association between PPC and health care costs is unclear and has not been studied over time. WHAT THIS STUDY ADDS: PPC recipients were more medically complex. Receipt of PPC was associated with lower costs when death was near but with greater costs among survivors. When controlling for medical complexity, costs did not differ significantly according to receipt of PPC. a Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, Utah; b Primary Children s Hospital, Salt Lake City, Utah; c Pediatric Advanced Care Team and the Center for Pediatric Clinical Effectiveness, The Children s Hospital of Philadelphia, Philadelphia, Pennsylvania; d Department of Pediatrics, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania; and e Department of Medical Ethics and Health Policy and the Leonard Davis Institute, University of Pennsylvania, Philadelphia, Pennsylvania Dr Smith conceptualized and designed the study, conducted analyses, and drafted the initial manuscript; Mr Andrews collected data, conducted analyses, and reviewed and revised the manuscript; Drs Bratton, Feudtner, and Zhong designed and conducted analyses, interpreted data, and reviewed and revised the manuscript; Dr Sheetz acquired and interpreted data and reviewed and revised the manuscript; Dr Maloney conceptualized and designed the study, interpreted data, and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted. DOI: /peds Accepted for publication Jan 27, 2015 Address correspondence to Andrew Smith, MD, Divisions of Pediatric Critical Care and Inpatient Medicine, 100 North Mario Capecchi Dr, Salt Lake City, UT andrew.gerald.smith@hsc. utah.edu PEDIATRICS (ISSN Numbers: Print, ; Online, ). Copyright 2015 by the American Academy of Pediatrics Downloaded from by guest on May 16, 2017 ARTICLE PEDIATRICS Volume 135, number 4, April 2015

45 Pediatric palliative care (PPC) is a rapidly emerging subspecialty; currently, 69% of children s hospitals offer PPC. 1 PPC programs typically care for patients with life-threatening or life-shortening conditions but are not limited to end-of-life of care, as PPC involvement with a patient most often persists for periods of time lasting.1 year. 2,3 PPC seeks to improve the quality of life and reduce distress for patients and families of children. 3 It is effective at both assisting with medical decisionmaking and providing emotional support, not only for the child, but also for siblings and parents. 4 Parents report that PPC improves their children s health-related quality of life and emotional well-being. 5 Whether receipt of PPC services alters health care cost is not clear. Adult palliative care reduces total inpatient costs for patients both during their terminal hospitalization and also for those discharged from hospital care compared with similar patients not receiving palliative care. 6,7 Receipt of pediatric hospice services in the ambulatory care setting has been associated with increased costs. 8 The present retrospective cohort study was conducted to examine the association of receipt of PPC services and costs among high-cost inpatients who, although small in number, consume a disproportionate amount of inpatient resources. 9,10 Specifically, we compared a cohort of high-cost inpatients, defined as the top decile of patients based on inpatient costs during a calendar year, according to receipt of PPC. These patients were followed up for 2 subsequent years to examine the association between PPC and inpatient cost over time. Patients were grouped into 3 distinct categories reflecting the various types of patients cared for by PPC: (1) patients who died during or very close to their terminal hospitalization; (2) patients who died during the follow-up period; and (3) patients who survived the follow-up period. METHODS We performed a retrospective cohort study of children with high inpatient costs during The study was approved by the Primary Children s Hospital (PCH) privacy board and the University of Utah s institutional review board, and it was granted a waiver for need of informed consent. Cohort All patients discharged from PCH in 2010 were identified. Total 2010 inpatient cost was calculated for each patient by using the cost accounting system of Intermountain Healthcare (IH). 11 The top decile of patients in 2010 was included for analysis. Exposure PCH s formal PPC consultation consists of an initial interdisciplinary team assessment with ongoing inpatient and outpatient follow-up. The team includes a medical director, advanced practice nurse, registered nurse, social worker, and interfaith chaplain. Referrals for PPC are made by the patient s primary inpatient team or by family request. PCH has not developed administrative predefined criteria for referrals. Consultation can be refused by the patient and family. We identified whether patients received formal PPC consultations during their 2010 inpatient stays by using data prospectively collected by the PCH PPC team and later reviewed for accuracy by the PCH PPC medical director. A PPC consultation was defined as intervention by all or part of the interdisciplinary PPC team in which discussion of goals of care, benefits and burdens of proposed treatments, quality of life, advance care planning, code status, communication, psychosocial and spiritual distress, or symptom management were addressed. Patients who received a PPC consultation after their final discharge in 2010 were excluded from analysis. Data The following 2010 data were collected for all patients in the highest inpatient cost decile using IH s enterprise data warehouse: inpatient length of stay, inpatient cost, gender, age, race, insurance status, admission to the PICU/cardiac intensive critical care unit or NICU, and use of invasive or noninvasive mechanical ventilation. For those patients previously admitted in 2009, inpatient length of stay and inpatient cost data were collected. Patients were classified as technology dependent and neurologically impaired according to predefined International Classification of Diseases, Ninth Revision, codes from their last 2010 admission. 10,12 Using previously described criteria, the number of organ systems affected by complex chronic conditions (CCCs) for each patient was established. 13 All surviving patients were tracked for readmission to PCH during the subsequent 730 days after their last hospital discharge in 2010 or until they died. Almost all pediatric hospital admissions in the state of Utah are at IH facilities. Any patient who lacked IH records after discharge in 2010 was considered to be lost to follow-up, and they were excluded from the analysis. For patients who were readmitted to PCH during the 730 days after discharge in 2010, total inpatient cost and hospital days from 2011 to 2012 were calculated by using the IH cost accounting system. We also calculated inpatient cost-per-day and determined if these patients received care in the PICU during 2011 and Death after discharge was identified by using both inpatient and outpatient records. Records included Utah Vital Statistics, IH administrative data, and the PCH PPC program database. Patients were identified in the Utah Vital Statistics database using name, date of birth, and Social Security number. Downloaded from by guest on May 16, 2017 PEDIATRICS Volume 135, number 4, April

46 Analytical Framework Inpatient cost and utilization were compared between those who received PPC consultation and those who did not receive PPC consultation in 2010 in several ways. Primary Analysis: Comparisons by Survival Status Initially, we compared 2010 total inpatient cost, length of stay, and cost-per-day for all patients in the cohort. Patients were then separated into the following 3 groups based on survival and time to death: Group 1: Patients who died during a 2010 admission or within 10 days of discharge Group 2: Patients who died between 11 days and 730 days after their last 2010 discharge Group 3: Patients who survived for 730 days after their last 2010 discharge Secondary Analysis: Cost-Per-Day Before and After PPC Consultation For patients who received an initial PPC consultation during their 2010 admission, cost-per-day before and after the PPC consultation were compared. Two patients received a PPC consultation on the day of their 2010 discharge, and 5 patients received a consultation on the day before their 2010 discharge. These 7 patients received,24 hours of inpatient care after their PPC consultation and were therefore excluded from the before and after analysis. They were, however, included in the comparison over time analysis. Outcomes Cost and utilization data were compared between PPC recipients and nonrecipients by using the following outcome data: Group 1: Patients who died during a 2010 admission or within 10 days of discharge Total 2010 inpatient cost (primary outcome) Total 2010 inpatient length of stay 2010 inpatient cost-per-day Group 2: Patients who died between 11 days and 730 days after their last 2010 discharge Total inpatient cost (primary outcome) Total inpatient length of stay inpatient cost-per-day Time to death after discharge in 2010 Admission to the hospital during admission to the PICU Group 3: Patients who survived for 730 days after their last 2010 discharge Total inpatient cost (primary outcome) Total inpatient length of stay inpatient cost-per-day Admission to the hospital in admission to the PICU Statistical Analysis Statistical analysis was performed by using SPSS version 21.0 (IBM SPSS Statistics, IBM Corporation, Armonk, NY) and Stata version 13.1 (State Corp, College Station, TX). Mean 6 SD values were calculated for continuous data with normal distributions, and median and interquartile ranks were calculated for nonparametric data. Categorical data were compared by using x 2 tests and relative risk (RR) ratios with 95% confidence intervals (CIs). Continuous data were compared by using either the 2-tailed Student s t test or the Mann-Whitney U test when nonparametric testing was appropriate. Factors associated with receipt of PPC were evaluated by using step-wise forward logistic regression using P,.05 for addition to the model and P,.10 for term removal. The adjusted odds ratio (ORs) and 95% CIs are reported. Because patients with PPC consultations had more complex problems with more CCCs, greater use of medical technology, and greater medical use in 2009, multivariable models were developed. Covariates in the multivariate model included age, gender, race previous year total inpatient cost, neurologic impairments, technology dependence, and total number of CCCs. Multivariate comparisons in group 1 (patients who died during their 2010 admission or within 10 days) and group 3 (patients who survived 2 years of follow-up) also included CCC according to organ system category as a covariate. Multivariate comparison of group 2 (patients who died between 11 days and 730 days during follow-up) lacked enough power to include CCC according to organ system category as a covariate. For multivariable models, a generalized linear model (GLM) with a g distribution and a log link 14,15 was fitted for group 1. Two-part models were used for groups 2 and 3 because a significant proportion of patients incurred zero inpatient cost during the follow-up. In the 2-part model, the first component was a logit model that estimated the probability of having zero cost in the follow-up, and the second component was a GLM fitted to those patients with non-zero cost. The GLM was specified as having a g distribution and a log link. The effect of PPC consultations was calculated from the combined first- and secondpart models. The 2-part models were implemented by using the Stata twopm command. Statistical significance was set at a P value of,.05. RESULTS In 2010, a total of unique patients were discharged from PCH. Of the 1003 top decile patients, 902 were included in the analysis. Eightynine patients were lost to follow-up, and 12 patients were excluded Downloaded from by guest on May 16, SMITH et al

47 because they received PPC after Ninety-eight (10.9%) patients were referred for a formal PPC consultation in Of those referred, 86 (95%) received a formal consultation (Fig 1). PPC patients were more likely to be older, technology dependent, neurologically impaired, be admitted to the PICU (compared with the general ward), die, and have.2 CCCs (Table 1). In a multivariate logistic analysis, patients who received PPC were more likely to be technology dependent, have.2 CCCs, be admitted to the PICU, and die during Death and PICU admission in 2010 had the greatest association (OR: 11.2 [95% CI: ] and 4.8 [95% CI: ], respectively) with PPC (Table 2) Inpatient Cost and Utilization Comparison for All Patients PPC recipients accrued significantly greater inpatient costs (median: $ vs $90 791; P =.000) and longer hospital stays (median: 37 vs 26 days; P =.002) than nonrecipients in The 2010 median cost-perday was significantly higher for PPC recipients than for nonrecipients (median: $3755 vs $3404; P =.035). Primary Analysis: Inpatient Cost and Utilization Comparison According to Survival Status Group 1: Patients Who Died During Their 2010 Admission or Within 10 Days of Discharge (n = 63) Among those who died during their final 2010 admission or within 10 days after discharge, median total costs and length of stay did not differ according to receipt of PCC. The median cost-per-day for PPC recipients was significantly less than for nonrecipients (median: $4260 vs $5945; P =.001) (Table 3). The multivariate analysis demonstrated no significant difference in total 2010 inpatient cost between PPC recipients and nonrecipients (average total 2010 cost: $ vs $ ; P =.8). Group 2: Costs Among Patients Who Died During the 2-Year Follow-up Period (n = 45) Among patients who died during the subsequent 2 years after discharge in 2010, PPC recipients were one-half as likely to be admitted to the hospital than nonrecipients (RR: 0.5 [95% CI: ]). Median total follow-up cost and length of stay over the subsequent 2 years were significantly lower for PPC recipients compared with nonrecipients. There was no statistically significant difference in inpatient cost-per-day or admission to the PICU between PPC recipients and nonrecipients during the followup period. Days elapsed after 2010 hospital discharge to death was significantly less in PPC recipients than in nonrecipients (median: 140 vs 249 days). Although not statistically significant, the multivariate model and GLM demonstrated a trend that suggested PPC recipients incurred fewer total inpatient costs compared with nonrecipients during the followup period (average total follow-up cost: $ vs $ ; P =.4). Group 3: Costs Among Patients Who Survived the 2-Year Follow-up Period (n = 794) Among those who survived the 2-year follow-up period, PPC recipients were more likely to be admitted to the hospital during follow-up compared with nonrecipients (RR: 2.1 [95% CI: ]). PPC recipients also accrued statistically higher total inpatient costs and length of stay during follow-up than nonrecipients. PPC recipients had a higher cost-per-day and were more likely to be admitted to the PICU during follow-up as well. However, adjusted for differences in complexity, the multivariate model showed that total inpatient cost was not significantly different between PPC recipients and nonrecipients (average total follow-up cost: $ vs $27 895; P =.06). FIGURE 1 Consolidated Standards of Reporting Trials diagram of the study population and patients according to survival group. Secondary Outcome: Cost-Per-Day Before and After PPC consultation Fifty-three patients received their initial PPC consultation before discharge during a 2010 admission. The cost-per-day in 2010 was significantly less costly after PPC Downloaded from by guest on May 16, 2017 PEDIATRICS Volume 135, number 4, April

48 TABLE Patient Demographic Characteristics and Medical Conditions Variable No Palliative Care Palliative Care P consultation than before (P,.0001). The median cost-per-day before PPC consultation was $4732; after consultation, the median cost was $3625. DISCUSSION Our study identified that 1 in 10 highcost patients received PPC. Although death during the index year was associated with receipt of PPC, only 35% of infants and children who died in the hospital received PPC. PPC consultation occurred more frequently among the highest cost patients of the top decile in the index year (ie, 2010). Our results suggest, however, that the association between receipt of PPC among high-cost inpatients and inpatient cost is N = 816 % N =86 % Age* d d 23 mo y y $13 y Male gender White race Insurance.061 Government Private None Neurologically impaired* Technology dependent* CCCs* PICU admission* NICU admission* Invasive ventilatory support* Noninvasive ventilatory support* Death* *P value,.05. complex. Inpatient cost seemed to be linked more closely to the child s illness and proximity to death than to PPC per se. For patients who survived beyond the immediate discharge period but subsequently died, receipt of PPC was associated with decreased cost among high-cost inpatients. For PPC recipient patients who did not die, costs were increased compared with patients who did not receive PPC. These mixed findings are likely due to the various reasons why high-cost inpatients were referred to and received PPC. Not surprisingly, we observed that patients who received PPC were more likely to die than those who did not. Proximity to death, however, is only 1 rationale of many TABLE 2 Patient Characteristics Associated With Receipt of PPC in 2010 Variable OR CI Death Hospital unit admission during 2010 Medical/surgical ward only Reference Group PICU admission NICU admission PICU and NICU admission Technology dependence CCCs Neurologically impaired for providing patients with PPC. Indeed, the majority of patients who received PPC did not die during the study period. Rather than focusing only on end of life, PPC is provided to help improve the quality of life for children with serious illness that often verges on chronic critical illness. Our study found that PPC recipients had more medically complex conditions than nonrecipients. Because PPC cares for patients both near and far from death, a better description of pediatric patients who receive PPC is not simply that they have a high risk of death but also that they will likely always have significant medical needs due to their serious underlying conditions and thus are likely to be lifelong high-resource ultizers. 2 Among those high-cost inpatients who died during or soon after their terminal hospitalization, we found that receipt of PPC was not consistently associated with all measures of lower costs (ie, total, length of stay) but was associated with decreased daily cost. When adjusting for complexity, receipt of PPC did not increase cost. Given that previous studies have shown that receipt of PPC enhances family satisfaction with care, the receipt of PPC is likely to be associated with increased value among high-cost inpatients who die during or soon after their terminal hospitalization. 4 Our findings differ from a previous analysis of hospital administrative billing data, which examined hospital charges and receipt of PPC. 16 The study, which included data from.40 children s hospitals, examined hospital charges among all patients who died after 5 days during their terminal hospitalization. Although this study and the present one both reported a decrease in charge/costper-day among patients who received PPC, the previous study also reported a decrease in total charges and length of stay among recipients of PPC. This difference may be due to the previous Downloaded from by guest on May 16, SMITH et al

49 TABLE 3 Inpatient Costs and Utilization Among Patients Who Died During 2010 Admission or Within 10 d of Discharge, Patients Who Died After $10 Days After 2010 Discharge, and Patients Who Survived the 2-Year Follow-up Patient Group No Palliative Care Palliative Care P All patients who died during 2010 admission or within days of discharge N =41 N =22 Median Interquartile Median Interquartile Total cost 2010 $ $84 689/$ $79 245/$ LOS d 14.3/55 d 36.8 d 18.7/64.3 d.121 Cost/day 2010 $5945 $4735/$8940 $4260 $3071/$ Subsequent inpatient costs in patients who died after $10 days after 2010 discharge N =24 N =21 Median Interquartile Median Interquartile Total cost $ $9621/$ $0 $0/$ LOS d 3.6/61.2 d 0 d 0/26.1 d.010 Cost/day $3487 $2452/$4596 $0 $0/$ Time to death 259 d 179/517 d 140 d 34/403 d.029 N % N % Hospital admission PICU admission Subsequent inpatient costs in patients who survived N = 751 N = 43 Median Interquartile Median Interquartile Total cost $0 $0/$ $ $0/$93 280,.001 LOS d 0/6.0 d 9.1 d 0/31.4 d,.001 Cost/day $0 $0/$2956 $2965 $0/$4295,.001 N % N % LOS, length of stay. Hospital admission ,.001 PICU admission ,.001 study s reliance on billing data to discern patient exposure to PPC (whereas in our study, the electronic medical record was used to document receipt of PPC services) or due to the fact that our study evaluated only patients within the upper decile costs in The present study is the first to examine the association of inpatient cost and receipt of PPC over time among high-cost inpatients. Because our hospital system uses a detailed cost accounting system, we were able to present costs rather than charges. Among children who survived over the 2-year follow-up period, patients who received PPC accrued more costs and had more inpatient days than nonrecipients in the subsequent 2 years. PPC recipients seemed to be more medically complex compared with nonrecipients, which likely accounts for this increase in cost, as we found no difference in cost when controlling for complexity and other factors. Among those patients who died during the subsequent 2 years of follow-up, PPC recipients had less total inpatient costs and hospital days. However, statistical significance did not persist in the adjusted model, which might be related to small study number. Our findings are limited by several factors. First, our results were based on retrospective, administrative data from a single institution, and PPC practices vary by hospital. Second, patient cost could be associated with receipt of PPC (due to patients with chronic critical illnesses being selectively referred for PPC). To minimize this potential bias, we intentionally limited our analysis to only high-cost inpatients. Our findings regarding inpatient costs, time to death, and PPC among very high-cost inpatients cannot be reliably generalized to all pediatric inpatients with life-threatening or life-shortening conditions. Finally, although we excluded patients lost to follow-up, we were unable to include inpatient costs associated with patients who sought inpatient care outside Utah and also continued to seek care at PCH. CONCLUSIONS As escalating health care costs continue to cause concern, policy makers and health care providers are examining various solutions to increase the value of health care. One option often explored is palliative Downloaded from by guest on May 16, 2017 PEDIATRICS Volume 135, number 4, April

50 care. Previous research has shown that PPC improves quality. 4,5 Our findings suggest that among children who have experienced substantial previous inpatient care, health care which emphasizes quality of life does not increase cost and may cost less when children are close to death. Thus, an argument can be made that PPC can increase the value of inpatient health care among high-cost inpatients. FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose. FUNDING: Partially supported by a grant from the Primary Children s Foundation. POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose. REFERENCES 1. Feudtner C, Womer J, Augustin R, et al. Pediatric palliative care programs in children s hospitals: a cross-sectional national survey. Pediatrics. 2013;132(6): Feudtner C, Kang TI, Hexem KR, et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics. 2011;127(6): American Academy of Pediatrics. Policy statement. Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics. 2013; 132(5): Sheetz MJ, Bowman MA. Parents perceptions of a pediatric palliative program. Am J Hosp Palliat Care. 2013; 30(3): Hays RM, Valentine J, Haynes G, et al. The Seattle Pediatric Palliative Care Project: effects on family satisfaction and healthrelated quality of life. J Palliat Med. 2006; 9(3): Penrod JD, Deb P, Luhrs C, et al. Cost and utilization outcomes of patients receiving hospital-based palliative care consultation. J Palliat Med. 2006;9(4): Morrison RS, Penrod JD, Cassel JB, et al; Palliative Care Leadership Centers Outcomes Group. Cost savings associated with US hospital palliative care consultation programs. Arch Intern Med. 2008;168(16): Knapp CA, Shenkman EA, Marcu MI, Madden VL, Terza JV. Pediatric palliative care: describing hospice users and identifying factors that affect hospice expenditures. J Palliat Med. 2009;12(3): Berry JG, Hall DE, Kuo DZ, et al. Hospital utilization and characteristics of patients experiencing recurrent readmissions within children s hospitals. JAMA. 2011; 305(7): Simon TD, Berry J, Feudtner C, et al. Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics. 2010; 126(4): James BC, Savitz LA. How Intermountain trimmed health care costs through robust quality improvement efforts. Health Aff (Millwood). 2011;30(6): Berry JG, Poduri A, Bonkowsky JL, et al. Trends in resource utilization by children with neurological impairment in the United States inpatient health care system: a repeat cross-sectional study. PLoS Med. 2012;9(1):e Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD. Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics. 2001;107(6). Available at: org/cgi/content/full/107/6/e Manning WG, Mullahy J. Estimating log models: to transform or not to transform? J Health Econ. 2001;20(4): Available at: gov/pubmed/ Accessed September 12, Blough DK, Madden CW, Hornbrook MC. Modeling risk using generalized linear models. J Health Econ. 1999;18(2): Available at: gov/pubmed/ Accessed September 12, Keele L, Keenan HT, Sheetz J, Bratton SL. Differences in characteristics of dying children who receive and do not receive palliative care. Pediatrics. 2013;132(1): Downloaded from by guest on May 16, SMITH et al

51 Pediatric Palliative Care and Inpatient Hospital Costs: A Longitudinal Cohort Study Andrew G. Smith, Seth Andrews, Susan L. Bratton, Joan Sheetz, Chris Feudtner, Wenjun Zhong and Christopher G. Maloney Pediatrics 2015;135;694; originally published online March 23, 2015; DOI: /peds Updated Information & Services References Citations Subspecialty Collections Permissions & Licensing Reprints including high resolution figures, can be found at: /content/135/4/694.full.html This article cites 16 articles, 7 of which can be accessed free at: /content/135/4/694.full.html#ref-list-1 This article has been cited by 3 HighWire-hosted articles: /content/135/4/694.full.html#related-urls This article, along with others on similar topics, appears in the following collection(s): Hospice/Palliative Medicine /cgi/collection/hospice:palliative_medicine_sub Information about reproducing this article in parts (figures, tables) or in its entirety can be found online at: /site/misc/permissions.xhtml Information about ordering reprints can be found online: /site/misc/reprints.xhtml PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since PEDIATRICS is owned, published, and trademarked by the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, Illinois, Copyright 2015 by the American Academy of Pediatrics. All rights reserved. Print ISSN: Online ISSN: Downloaded from by guest on May 16, 2017

52 Pediatric Palliative Care and Inpatient Hospital Costs: A Longitudinal Cohort Study Andrew G. Smith, Seth Andrews, Susan L. Bratton, Joan Sheetz, Chris Feudtner, Wenjun Zhong and Christopher G. Maloney Pediatrics 2015;135;694; originally published online March 23, 2015; DOI: /peds The online version of this article, along with updated information and services, is located on the World Wide Web at: /content/135/4/694.full.html PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since PEDIATRICS is owned, published, and trademarked by the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, Illinois, Copyright 2015 by the American Academy of Pediatrics. All rights reserved. Print ISSN: Online ISSN: Downloaded from by guest on May 16, 2017

53 Progetto piccolo ma bello Regione Veneto Struttura: Azienda Ospedaliera di Padova titolo del progetto Massaggio Shiatsu supporto delle cure in Oncoematologia Pediatrica

54 Scheda: #33 - Veneto Nome Struttura: Regione: Indirizzo: Sito di Riferimento: Resp. Struttura: Assess. proponente: Titolo del Progetto: Azienda Ospedaliera di Padova Veneto Via N. Giustiniani, Padova Prof. Giuseppe Basso Area Sanità e Sociale della Regione Veneto Data: 01/01/ /12/2017 Il Massaggio Shiatsu a supporto delle cure in Oncoematologia Pediatrica Descrizione/Obiettivi: Nel Reparto della Clinica di Oncoematologia Pediatrica dell Azienda Ospedaliera Università di Padova, viene realizzato un programma di sedute di massaggio Shiatsu, con frequenza bi-settimanale, con la collaborazione di operatori volontari della Scuola Internazionale di Shiatsu Italia Padova. Il massaggio viene sempre proposto e mai imposto al bambino ricoverato, concedendogli la possibilità di provarlo prima su una parte più esterna del corpo, come la mano, per poi passare al trattamento di altre zone. Risulta fondamentale consentire al bambino di poter scegliere se ricevere o meno il massaggio, poiché in ospedale deve già subire trattamenti, visite mediche e procedure invasive, che limitano fortemente la sua libertà decisionale. Obiettivi: migliorare la qualità di vita durante le cure ed anche in fase terminale ridurre alcuni vissuti emotivi negativi quali paura, ansia ed inquietudine favorire il rilassamento fornire sollievo: diminuire alcuni sintomi fisici come il dolore e la tensione muscolare Risultati: Gli effetti del massaggio sembrano più variabili per i bambini più piccoli, che spesso si addormentano subito dopo averlo ricevuto e per i quali appare preferibile riceverlo dai propri genitori, probabilmente per il legame di dipendenza maggiore esistente nella diade genitore-bambino; i bambini in età scolare e gli adolescenti, invece, dopo aver costruito una relazione positiva con l operatore, accettano sempre più volentieri di ricevere il massaggio Shiatsu, dichiarando di sentirsi meglio, più rilassati e di tollerare meglio gli effetti collaterali dei trattamenti (v. progetto completo e altri allegati). Il massaggio Shiatsu praticato con pazienti pediatrici oncologici sembra ridurre il distress fisico ed emotivo legato ai trattamenti, offrendo loro la possibilità di sperimentare momenti di rilassamento e distrazione dalla condizione di malattia. Ciò appare avere un impatto positivo anche sui genitori, che si sentono più sereni all idea che il loro figlio possa beneficiare di piccole pause di sollievo dagli effetti collaterali delle terapie. Sarebbe auspicabile introdurre un programma di massaggio destinato ai genitori, con l obiettivo di ridurre il loro distress, potenziare la loro capacità di fronteggiare l impatto fisico ed emotivo della malattia oncologica del loro figlio soprattutto in fase terminale. Allegati: aaa #33 - testimonianze-shiatsu-oep-padova-1.pdf #33 - Brochure Progetto Shiatsu in oncoematologia.pdf #33 - Scheda Premio Gerbera 2017_Shiatsu_AO Padova.pdf 35

55 TESTIMONIANZE SULLO SHIATSU DEI PAZIENTI DELLA CLINICA DI ONCOEMATOLOGIA PEDIATRICA DI PADOVA Carlo, un ragazzo di 15 anni, ricoverato in Reparto, ha scritto: Non conoscevo lo shiatsu e quando mi è stato proposto ero un po titubante. Devo ammettere però che, mentre mi veniva praticato, mi sono sentito molto rilassato. Non provavo più nessun dolore ed ero libero da ogni pensiero; anzi mi sentivo proprio bene, tanto da non pensare più alla mia malattia. Sono molto contento che ci sia questa opportunità per noi ragazzi! Scrive Marta, una ragazza di 23 anni, che da ragazzina aveva sofferto di leucemia: Avevo undici anni ed ero ricoverata nel reparto di Oncoematologia Pediatrica di Padova quando, per la prima volta, ho conosciuto lo shiatsu e me ne sono innamorata. In ospedale i giorni passavano e spesso la noia si faceva sentire; ma per fortuna al pomeriggio venivano dei volontari bravissimi che ci coinvolgevano in diverse attività, come ad esempio colorare, dipingere e costruire, così da passare dei momenti in compagnia, divertendosi. Un giorno, sono arrivati dei volontari diversi. Le infermiere mi dissero che potevo restare pure nel mio letto perché loro facevano trattamenti shiatsu. Senza nessuna esitazione accolsi la proposta per fare il trattamento, e ne fui entusiasta! È stata un esperienza bellissima che avrei voluto non terminasse più, mi sentivo bene e con più energia, ma nel contempo rilassata. Dal momento in cui il trattamento finì, non vedevo l ora che queste persone tornassero! La volta dopo che vennero a trovarci i volontari di shiatsu, non stavo per niente bene, avevo una forte cistite che ormai si prolungava da qualche tempo e non voleva andarsene, ma al trattamento non intendevo rinunciare. L operatrice entrò nella mia stanza e cominciò il trattamento. Dopo pochi minuti, senza che avessi detto niente, mi chiese se avevo dei problemi a livello dei reni e della vescica. Io restai spiazzata e confermai. Dopo il trattamento stavo molto meglio, il dolore era quasi scomparso e nel tempo di tre giorni sparì anche la cistite. Fu da quel momento che seppi che, quando sarei stata più grande, avrei frequentato un corso di shiatsu, in modo tale che anch io potessi far star meglio le persone, come gli operatori shiatsu venuti in ospedale avevano fatto star bene me. In seguito, ricevetti trattamenti anche a casa, che mi aiutarono sia a rilassarmi e dedicare del tempo piacevole a me stessa, che ad affrontare le cure con animo più positivo. Tutte queste esperienze fortificarono la mia idea di studiare shiatsu, tanto che - finita la maturità - ho intrapreso questo percorso. Oggi, dopo undici anni dalla malattia e cinque da quando ho iniziato a praticare shiatsu, sono sempre più contenta e soddisfatta della scelta, perché è una pratica che mi trasmette un energia bellissima e mi ha fatto vedere un modo diverso di approcciarmi alle persone, facendole star meglio sia nell ambiente che le circonda sia con sé stesse. Di tutto ciò devo ringraziare i volontari che ho conosciuto in ospedale, perché è stato per merito loro che ho cominciato a praticare questa disciplina.

56 AZIENDA OSPEDALIERA DI PADOVA Dipartimento Strutturale Aziendale Salute della Donna e del Bambino UOC Clinica Pediatrica Direttore: Prof. Dott. Giorgio Perilongo Shiatsu in Pediatria

57 COSA E LO SHIATSU? Quando le mani possono donare il sorriso a un bambino malato Lo Shiatsu è una disciplina che si occupa dell uomo, della sua educazione e della sua formazione nell ambito di uno stile di vita rispettoso dell ambiente, nella conoscenza di se stesso, nel miglioramento della qualità della vita, nell equilibrio interiore e nella stimolazione delle proprie risorse vitali. Si tratta di una tecnica singolare che si caratterizza per il fatto di agire per mezzo di una pressione statica, fatto unico in questo ambito, portata perpendicolare e con il peso del corpo, arrivando a riattivare, a progressivi livelli di profondità, le diverse fasce di esistenza della persona (fisica, energetica, psicologica, mentale), facendo con ciò scaturire il movimento dall interno in risposta alla statistica della pressione esterna. L operatore usa uno strumento semplice e fondamentale: le sue mani. L uso delle mani è un abilità che rende l uomo un animale unico. Il tatto è l essenza dello shiatsu. Nei momenti di fatica o dopo un trauma, il tocco di una mano è sempre di grande sollievo. La mano è l estensione del nostro cuore. Poichè questa abilità è comune a tutti, chiunque è in grado di praticare uno shiatsu efficace. Tramite il tatto, l operatore attiva nel ricevente l innato meccanismo di autoguarigione.

58 ESPERIENZE DI VOLONTARIATO NEI REPARTI DI PEDIATRIA I bambini e i genitori dicono: Mi chiama il papà di Sara perché la figlia desidera un trattamento, mi avvicino alla ragazzina e lei, stesa a letto, si gira a pancia in giù. Ti piace ricevere il trattamento sulla schiena? le chiedo Mi piace da per tutto è la sua risposta. Una mamma strabiliata e incredula dice Non avrei mai pensato che dopo tante ore di insonnia mia figlia potesse addormentarsi dopo soli pochi minuti di trattamento. Un papà chiede che il figlio venga trattato ogni volta perché è l unica cosa che lo rilassa. Una bimba di nove anni dall atteggiamento prevenuto e restio a fare il trattamento si addormenta poco dopo. I genitori dicono che in quel periodo era molto tesa e adirata con tutto e tutti. Una bimba di 12 anni frequenta la clinica da 9 anni. Non ha mai accettato il trattamento Shiatsu e oggi decide che lo vuole fare. Ne resta stupefatta da quanto le piace. Le volte successive è così contenta di fare Shiatsu che per riceverlo manda via tutti dalla stanza e dice Voglio godermelo tutto non ci deve essere nessuno, solo io e te. Un ragazzo di 15 anni soffre di cefalee da due giorni. Dopo il trattamento mi dice sorridente Non c è più! Se n è andato finalmente! A volte i bimbi non dicono niente dopo il trattamento, non ne hanno le forze o non sanno scegliere le parole giuste da dire, ma i loro occhioni sorridenti e riconoscenti parlano di più delle loro parole ringraziano con quelli Una bimba di 7 anni molto dolce, durante il trattamento sembra che pianga ma il viso resta sereno. Alle fine mi dice Mi scendevano le lacrime anche se non volevo, mi è piaciuto molto. Faccio il trattamento a Lucia, una bimba di circa 6 anni, siamo sole nella stanza; quando termini le dico Ora vado a chiamare la mamma. Ma poi altri bimbi mi chiamano e mi dimentico di Lucia. Alla fine del mio lavoro incontro la mamma, è felice, mi ringrazia, per la prima volta da quando è iniziata la malattia Lucia si è addormentata da sola.

59 Dipartimento di Pediatria di Padova Progetto Shiatsu Gli operatori Shiatsu sono presenti in Pediatria dal 1997 e collaborano in modo assiduo e continuativo con il personale sanitario che ha in cura il bambino. Non esistono serie controindicazioni al trattamento ma, agli operatori shiatsu vengono comunque presentati e discussi i bambini che il personale medico e infermieristico ritiene utile sottoporre al trattamento. Nei reparti di Pediatria il trattamento Shiatsu viene rivolto ai piccoli pazienti con problematiche di dolore, ma anche in altre situazioni in cui lo Shiatsu rappresenta una tecnica per stabilire una situazione di benessere e di rilassamento che spesso non è presente a causa della malattia e dell ospedalizzazione. Gli operatori che svolgono questa attività, sono persone con grande esperienza nel campo dello Shiatsu e nell ambito pediatrico: le manovre utilizzate oltre ad essere sicure, sono molto lievi e delicate, non vengono effettuate sul bambino con alcune modalità invasiva ma al contrario, ogni trattamento è personalizzato in base alle esigenza della sua patologia e alle richieste del bambino stesso. Scuola Internazionale di Shiatsu Italia Via G. B. Tiepolo, 67 - (zona Portello - Padova tel iss.pd@shiatsu.it Offre informazioni, indicazioni sull organizzazione dell Azienda, riceve richieste o segnalazioni. Fornisce indicazioni sull accoglienza dei parenti dei malati. L ufficio è aperto presso: Piano Rialzato Monoblocco (Azienda Ospedaliera di Padova - Via Giustiniani Padova) dal lunedì al venerdì dalle 8.30 alle 14.30; tel fax: urponline@aopd.veneto.it Ultimo aggiornamento