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ADESIONE ALLE TERAPIE a LUNGO TERMINE Problemi E Possibili Soluzioni

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ADESIONE ALLE TERAPIE a LUNGO TERMINE Problemi E Possibili Soluzioni ADESIONE ALLE TERAPIE A LUNGO TERMINE problemi e possibili soluzioni Published by the World Health Organization in 2003 under the title Adherence to long term therapies: Evidence for action © World Health Organization 2003 The Director-General of the World Health Organization has granted translation rights for an edition in Italian to Critical Medicine Publishing s.r.l., which is solely responsible for the italian edition. Edizione italiana a cura di E. Grossi Tutti i diritti riservati. Nessuna parte di questa pubblicazione può essere riprodotta o trasmessa in alcuna forma o con alcun mezzo, compresa la registrazione o le fotocopie, senza il permesso scritto dell’editore. © 2006 - Critical Medicine Publishing Editore 00143 Roma - Via G. Squarcina, 3 - Tel. 06.51951.1 www.cmpedizioni.it Realizzazione grafica e stampa: Istituto Arti Grafiche Mengarelli - Roma ISBN 88-88415-25-4 Questa pubblicazione, realizzata con la collaborazione di Bracco S.p.A. è offerta in omaggio ai sigg. Medici Indice Sezione I Disegnare lo scenario 19 Capitolo I Definire il concetto di adesione ai trattamenti 21 Capitolo II Le dimensioni del problema della scarsa adesione ai trattamenti 27 Capitolo III Come può la scarsa adesione ai trattamenti interessare politici e manager della sanità? 31 SEZIONE II Migliorare l’adesione ai trattamenti: una guida per i paesi 37 Capitolo IV Le lezioni apprese 39 Capitolo V Verso la soluzione 51 Capitolo VI Come può il miglioramento dell’adesione ai trattamenti tradursi in benefici economici e per la salute? 71 SEZIONE III Review sulle specifiche patologie 79 Capitolo VII Asma 81 Capitolo VIII Cancro (Cure palliative) 101 Capitolo IX Depressione 109 Capitolo X Diabete 119 Capitolo XI Epilessia 141 Capitolo XII HIV e AIDS 151 Capitolo XIII Ipertensione 169 Capitolo XIV Fumo 179 Capitolo XV Tubercolosi 191 Appendice 203 Appendice I Meccanismi comportamentali alla base dell’adesione ai trattamenti 203 Appendice II Dichiarazioni 229 Appendice III Tabella dei fattori che influenzano l’adesione ai trattamenti riportati secondo la condizione patologica e le dimensioni 246 Appendice IV Tabella degli interventi riportati secondo la condizione patologica e le dimensioni 250 Prefazione Un elemento chiave dell’atto terapeutico è l’adesione del paziente ai suggeri- menti e alle prescrizioni del medico, solitamente definita con il termine inglese “compliance”. La compliance del paziente alla terapia farmacologica rappresenta uno dei pro- blemi più importanti della pratica clinica dal momento che il successo di qualsiasi intervento terapeutico dipende dalla effettiva adesione del paziente alla terapia. La non compliance al trattamento ha come dirette conseguenze la distorsione dell’efficacia del trattamento e l’emergere di problematiche connesse con un incre- mento dei costi legato ad una inefficace gestione della patologia. Uno studio condotto nel 1997 negli USA ha messo in evidenza che i costi della non compliance sono di gran lunga superiori a quelli della spesa farmaceutica globale. È chiaro che per garantire un successo è necessario un intervento coordina- to da parte dei principali attori coinvolti (medico generalista e specialista, farma- cista, paramedico, familiare, autorità sanitarie, industria farmaceutica) accompa- gnato da vaste iniziative di sensibilizzazione al problema e divulgazione dei prin- cipi fondamentali su cui si basano le strategie di controllo della mancata adesio- ne alla terapia. A fronte di questa sorta di buco nero che sembra poter inghiottire intere aree terapeutiche di grande rilevanza sociale, il panorama di iniziative culturali ed edu- cazionali sul tema adesione alla terapia è piuttosto avvilente non solo nel nostro paese ma in tutto il mondo. È proprio per questo che il volume edito dalla World Health Organization assu- me una rilevanza particolare. Uno dei problemi più delicati è stato quello di trovare un termine italiano per tradurre efficacemente “compliance”e soprattutto “adherence”,termine che fa parte del titolo originale dell’opera. Tra le varie soluzioni possibili “Adesione” ci è alla fine sembrato il modo più cor- retto per rendere al meglio il significato di un concetto che più che quello di una semplice obbedienza ad una prescrizione (secondo un approccio paternalistico or- mai superato) deve avere in sé l’idea di una vera e propria alleanza e condivisione terapeutica.Il primo passo infatti per ridurre l’entità della non adesione è una mag- giore consapevolezza della sua importanza da parte del paziente,attraverso un mi- glioramento della comunicazione e una maggiore conoscenza della problematica sottostante. 5 Ci auguriamo che questa iniziativa, che rientra nel novero degli impegni che Bracco si è assunta per giocare un ruolo istituzionale importante nel campo sociale, incontri il favore della classe medica e possa favorire un più ampio dibattito tra tutti gli addetti ai lavori nell’interesse della qualità di vita dei pazienti in particolare di quelli affetti da malattie croniche denegerative. Un particolare ringraziamento va alla dottoressa Aide Petrini e alla dottoressa Rosa Quaranta per la loro assistenza tecnica nella traduzione. Enzo Grossi Direttore Medico Bracco SpA 6 Preface Over the past few decades we have witnessed severa I phases in the develop- ment of approaches aimed at ensuring that patients continue therapy for chronic conditions for long periods of time. lnitially the patient was thought to be the source of the “problem of compliance”. Later, the role of the providers was also ad- dressed. Now we acknowledge that a systems approach is required. The idea of compliance is associated too closely with blame, be it of providers or patients and the concept of adherence is a better way of capturing the dynamic and complex changes required of many players over long periods to maintain optimal health in people with chronic diseases. This report provides a critical review of what is known about adherence to long-term therapies.This is achieved by looking beyond individual diseases. By in- cluding communicable diseases such as tuberculosis and human immunodeficien- cy virus/acquired immunodeficiency syndrome; mental and neurological condi- tions such as depression and epilepsy; substance dependence (exemplified by smoking cessation); as well as hypertension,asthma and palliative care for cancer,a broad range of policy options emerges. Furthermore,this broader focus highlights certain common issues that need to be addressed with respect to ali chronic conditions regardless of their cause.These are primarily related to the way in which health systems are structured, financed and operated. We hope that readers of this report will recognize that simplistic approaches to improving the quality of life of people with chronic conditions are not possible. What is required instead, is a deliberative approach that starts with reviewing the way health professionals are trained and rewarded, and includes systematically tackling the many barriers patients and their families encounter as they strive daily to maintain optimal health. This report is intended to make a modest contribution to a much-needed de- bate about adherence.It provides analysis and solutions, it recommends that more research be conducted, but critically acknowledges the abundance of what we al- ready know but do not apply.The potential rewards for patients and societies of ad- dressing adherence to long-term therapies are large.WHO urges the readers of this report to work with us as we make the rewards real. Derek Yach January 2003 7 Acknowledgements This report was edited by Eduardo Sabaté,WHO Medical Officer responsible for coordinating the WHO Adherence to Long-term Therapies Project,Management of Noncommunicable Diseases Department. Deep appreciation is due to Rafael Bengoa, who envisioned the project and shaped the most crucial elements of the report, Derek Yach, who provided consis- tent support, intellectual stimulation and leadership to the project and Silvana De Castro, who provided valuable assistance with the many bibliographical reviews and with the writing of specific sections of this report. Special appreciation goes to the scientific writers who provided their ideas and the material for the report.Their dedication and voluntary contributions have been central to this work.Thanks are also due to all the participants from WHO and the Global Adherence Interdisciplinary Network (GAIN) who by their continuous in- volvement and input during the planning, resource collection and writing phases of this project have given breadth and depth to the reparto. Special thanks go to Steve Hotz for his intellectual support and hard work in helping to integrate the information on behavioural knowledge and its practical implications.Several international professional associations,in particular the Inter- national Society of Behavioural Medicine, the International Council of Nurses, the International Union of Psychological Sciences, the International Pharmaceutical Federation, and the World Organization of Family Doctors have played an impor- tant role in providing moral support and valuable input to the report. Thanks are also due to Susan Kaplan, who edited the final text, and Tushita Bosonet,who was responsible for the artistic design. The production of this report was made possible through the generous finan- cial support of the governements of United Kingdom,Finland and Netherlands. 9 Scientific writers The scientific writers who were invited to contribute to the report are recog- nized scientists in adherence-related
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