Therapeutic Patient Education on Atopic Dermatitis ......Atopic dermatitis (AD) is a chronic skin...

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Therapeutic Patient Education on Atopic Dermatitis: Worldwide Experiences Jean-Francois Stalder, M.D.,* Claire Bernier, M.D.,* Alan Ball, 1 ,* Linda De Raeve, M.D.,Uwe Gieler, M.D.,Mette Deleuran, M.D.,§ Danielle Marcoux, M.D.,Larry Eichenfield, M.D.,** Peter Lio, M.D.,†† Sue Lewis-Jones, M.D.,‡‡ Carlo Gelmetti, M.D.,§§ Roberto Takaoka, M.D.,¶¶ Christine Chiaverini, M.D.,*** Laurent Misery, M.D.,††† Sebastian Barbarot, M.D.,* and for the Oriented Patient-Education Network in Dermatology (OPENED) *Department of Dermatology, Nantes University Hospital, Nantes, France, Department of Dermatology UZ Brussels, Vrije Universiteit Brussel, Brussels, Belgium, Department of Psychosomatic Medicine- Psychodermatology, University of Giessen, Giessen, Germany, §Department of Dermatology, Aarhus University Hospital, Aarhus, Denmark, Department of Dermatology, St Justine University Hospital, Montreal, Canada, **Department of Dermatology, Rady Children’s Hospital, San Diego, California, ††Department of Dermatology, Children’s Memorial Hospital, Chicago, Illinois, ‡‡Department of Dermatology, Ninewells Hospital and Medical School, Dundee, Scotland, §§Department of Anesthesia, Intensive Care and Dermatological Sciences, Fondazione Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy, ¶¶Department of Dermatology, University of Sao Paulo Medical School, Sao Paulo, Brazil, ***Department of Dermatology, Archet Hospital, Nice, France, †††Department of Dermatology, University Hospital, Brest, France Abstract: Therapeutic patient education (TPE) has proven effective in increasing treatment adherence and improving quality of life for patients with numerous chronic diseases, especially atopic dermatitis (AD). This study was undertaken to identify worldwide TPE experiences in AD treatment. Experts from 23 hospitals, located in 11 countries, responded to a questionnaire on 10 major items. Patients were mainly children and adolescents with moderate to severe AD or markedly affected quality of life. Individual and collective approaches were used. Depending on the center, the number of sessions varied from one to six (corresponding to 212 hours), and 20200 patients were followed each year. Every center’s educative team comprised multidisciplinary professionals (e.g., doctor, nurse, psychologist). The evaluation was based on clinical assessment, quality of life, a satisfaction index, or some combination of the three. When funding had been obtained, it came from regional health authorities (France), insurance companies (Germany), donations (United States), or pharmaceutical firms (Japan, Italy). The role of patient associations was always highlighted, but their involvement in the TPE process varied from one country to another. Despite the nonexhaustive approach, our findings demonstrated the increasing interest in TPE for managing individuals with Address correspondence to Jean Francois Stalder, M.D., Service de Dermatologie, CHU de NantesHoˆtel Dieu, 44035 Nantes, France, or e-mail: [email protected]. DOI: 10.1111/pde.12024 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 © 2012 Wiley Periodicals, Inc. 1 REVIEW ARTICLE Pediatric Dermatology 1–6, 2012 P D E 1 2 0 2 4 B Dispatch: 28.9.12 Journal: PDE CE: Sangeeta Journal Name Manuscript No. Author Received: No. of pages: 6 PE: Karpagavalli

Transcript of Therapeutic Patient Education on Atopic Dermatitis ......Atopic dermatitis (AD) is a chronic skin...

Page 1: Therapeutic Patient Education on Atopic Dermatitis ......Atopic dermatitis (AD) is a chronic skin condition occurring in children and adults that may affect 5–20% of children. Its

Therapeutic Patient Education on AtopicDermatitis: Worldwide Experiences

Jean-Francois Stalder, M.D.,* Claire Bernier, M.D.,* Alan Ball,1 ,* Linda De Raeve, M.D.,†UweGieler,M.D.,‡Mette Deleuran,M.D.,§DanielleMarcoux,M.D.,¶Larry Eichenfield,M.D.,**Peter Lio,M.D.,†† Sue Lewis-Jones,M.D.,‡‡Carlo Gelmetti,M.D.,§§Roberto Takaoka,M.D.,¶¶Christine Chiaverini, M.D.,*** Laurent Misery, M.D.,††† Sebastian Barbarot, M.D.,* and for the

Oriented Patient-Education Network in Dermatology (OPENED)

*Department of Dermatology, Nantes University Hospital, Nantes, France, †Department of Dermatology UZBrussels, Vrije Universiteit Brussel, Brussels, Belgium, ‡Department of Psychosomatic Medicine-

Psychodermatology, University of Giessen, Giessen, Germany, §Department of Dermatology, Aarhus UniversityHospital, Aarhus, Denmark, ¶Department of Dermatology, St Justine University Hospital, Montreal, Canada,

**Department of Dermatology, Rady Children’s Hospital, San Diego, California, ††Department of Dermatology,Children’s Memorial Hospital, Chicago, Illinois, ‡‡Department of Dermatology, Ninewells Hospital and MedicalSchool, Dundee, Scotland, §§Department of Anesthesia, Intensive Care and Dermatological Sciences, FondazioneCa’ Granda Ospedale Maggiore Policlinico, Milan, Italy, ¶¶Department of Dermatology, University of Sao PauloMedical School, Sao Paulo, Brazil, ***Department of Dermatology, Archet Hospital, Nice, France, †††Department

of Dermatology, University Hospital, Brest, France

Abstract: Therapeutic patient education (TPE) has proven effective inincreasing treatment adherence and improving quality of life for patientswith numerous chronic diseases, especially atopic dermatitis (AD). Thisstudy was undertaken to identify worldwide TPE experiences in ADtreatment. Experts from 23 hospitals, located in 11 countries, respondedto a questionnaire on 10 major items. Patients were mainly children andadolescents with moderate to severe AD or markedly affected quality oflife. Individual and collective approaches were used. Depending on thecenter, the number of sessions varied from one to six (corresponding to2–12 hours), and 20–200 patients were followed each year. Every center’seducative team comprised multidisciplinary professionals (e.g., doctor,nurse, psychologist). The evaluation was based on clinical assessment,quality of life, a satisfaction index, or some combination of the three.When funding had been obtained, it came from regional health authorities(France), insurance companies (Germany), donations (United States), orpharmaceutical firms (Japan, Italy). The role of patient associations wasalways highlighted, but their involvement in the TPE process varied fromone country to another. Despite the nonexhaustive approach, our findingsdemonstrated the increasing interest in TPE for managing individuals with

Address correspondence to Jean Francois Stalder, M.D., Servicede Dermatologie, CHU de Nantes–Hotel Dieu, 44035 Nantes,France, or e-mail: [email protected].

DOI: 10.1111/pde.12024

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© 2012 Wiley Periodicals, Inc. 1

REVIEW ARTICLE

Pediatric Dermatology 1–6, 2012

P D E 1 2 0 2 4 B Dispatch: 28.9.12 Journal: PDE CE: Sangeeta

Journal Name Manuscript No. Author Received: No. of pages: 6 PE: Karpagavalli

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AD. In spite of the cultural and financial differences between countries,there is a consensus among experts to integrate education into thetreatment of eczema.

Atopic dermatitis (AD) is a chronic skin conditionoccurring in children and adults that may a!ect5–20% of children. Its course is characterized byalternating flares with pruritus and inflammatio, on abackground of permanent xerosis. AD can be dis-abling and can markedly a!ect the quality of life(QoL) of patients and their families.

E!ective treatments exist, as creams or ointments,but need to be adapted daily to the condition of thepatient’s skin. The success of these treatmentsdepends on the patient’s ability to master practicalskills—the right preparation, at the right time, appliedto the right place—which requires the active partic-ipation of their parents and families. Failure to treatAD successfully can often be directly linked to poortreatment adherence and even complete abandonmentof therapy.

TPE, as defined according to the World HealthOrganization (WHO) (12 ), is a continuous process ofpatient-centered medical care. This approach empow-ers patients to manage their disease by acquiring skills(e.g., self-management, treatment adaptation). Sev-eral consensus publications (2,3) have also empha-sized the importance of educating patients and theirfamilies by combining information and skill-acquisi-tion techniques (4), which lead directly to betterdisease management. Finally, patient education hasbeen shown to contribute e!ectively to preventingcomplications and improving QoL and treatmentadherence for numerous chronic illnesses, such asdiabetes, asthma, and cardiovascular disease (5).

Unlike those pathologies, therapeutic patient edu-cation (TPE) is poorly developed in the field ofdermatology, although several hospital teams aroundthe world have recently developed educational struc-tures called “eczema centers” or “atopic schools.”

Despite the numerous independent projects thathave been developed and reported in Europe (6,7),experience is fragmented and lacks structure. Weconducted an international inquiry of experts in thisfield to compile their di!erent experiences and encour-age the exchange of skills, tools, and good practices.

MATERIALS AND METHODS

This study was an integral part of the creation of aninternational network calledOrientedPatient-Education

Network in Dermatology (OPENED; http://www.opened-dermatology.com) dedicated to TPE in the fieldof chronic skin diseases.

A questionnaire covering 10 items, which werechosen according to the recommendations of thereference guide published by the French HealthAuthority (1), was sent to the head of the leadingeczema centers (Table 1). The centers included in thesurvey were selected according to articles publishedbetween 2009 and 2010.

RESULTS

All 23 experts, representing 23 hospitals in 11 coun-tries, replied to the questionnaire. The results werepresented according to three main headings:

Population: profile, age, symptom severity, numberof participants.

Process: type of program, tools used, evaluation ofthe educative action.

Organization: composition of the educative team,involvement of doctors outside the hospital setting,funding, role of patient associations.

Population

The patient profile was characterized by at least one ofthe three following notions: moderate to severe AD,significant e!ect on QoL, and treatment failure.Patients were mainly children or adolescents (20/22centers) except for in two centers that held TPEsessions only for adults. Overall, education for adultpatients was much less frequent (7/22 hospitals).

TABLE 1. Themes Addressed by the Questionnaire onTherapeutic Education for Atopic Dermatitis

Patient profile: age, symptom severityType of educative approach: individual or collectiveProgram contents and tools usedNumber of patients seen per yrComposition of educative teams and their trainingMode of evaluating educative actionsRelationship with private dermatologists and other healthcareproviders involved with the patientCenter’s organization and its fundingGeneral information on education policy in each countryRole of patient associations

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Patients were stratified according to age. The numberof patients participating annually in TPE ranged from20 to more than 200 per year.

Process

The type of educative approach was individual orcollective (Table 2). Individual sessions were devel-oped in 11 of 23 centers. Most of the time (7/10hospitals), these individual sessions included theparticipation of two experts: a physician and a nurse.Only in the United Kingdom did a nurse run sessions.The average duration of an individual session wasapproximately 45 minutes.

Collective sessions (mean duration 2 hours) wereorganized for groups of approximately 10 patients ofsimilar age in 19 of 23 centers, with the number ofsessions varying from one (Belgium) to six (Ger-many), or as mixed-population meetings of 100 ormore patients, often thematic, sometimes monthly(United States, Brazil, and Denmark). During theseworkshops, an interactive approach was used in 14 of23 centers; for the others, the presentation was moreacademic and informative.

Total TPE duration varied from 1.5 to 12 hoursspread out over several weeks (Table 2). Programcontent was based on theoretical information(e.g., epidemiology, pathogenesis, and course) andpractical skills information (e.g., application of treat-

ments, actions to combat itching, prevention offlares). According to the Berlin model (6), theprograms developed for collective sessions are struc-tured around several themes: know your illness better(origins, treatments, triggering factors), acquire prac-tical skills (when, where and how to apply treatment),and living with your disease (explaining your diseaseto others, asking for help during a flare). Thisstructured collective approach has been extended toother countries: France, where recommendationswere published (8), and Italy, where several atopicschools were created after the first meeting in Milan in2008 (9).

The tools used in the TPE sessions vary from onecenter to another. Several hospitals, nonetheless, usedsimilar metaphors, such as a burning house for a flare(Italy, France, and United States) or a fireman forcorticosteroids (France, Italy, and Belgium). Thesetools, often created by the TPE teams, include a busadventure (improving adherence), puppets (identi-fying symptoms), photo expression (encouragingcommunicationincollectivesessions),andsongs(remem-bering processes).

Di!erent tools were used that enabled caregivers tospeak about the essential points concerning AD:What are inflammation and skin dryness, and can Irecognize them? What are corticosteroids, and whenand how should I use them? Although all caregiversused information handouts, and 17 of the centers used

TABLE 2. Types of Education Approaches Used According to Center

Center

Individual approach Collective approach

YesSession duration,minutes Conducted by Yes

Session duration,minutes n

Brazil 9 120 3Canada 9 45 Dermatologist and nurse 9 45 2Denmark 9 30 Dermatologist and nurse 9 210 2Germany 1 9 120 6Germany 2 9 120 6Germany 3 9 120 6Italy 1 9 Dermatologist and nurseItaly 2 9 45 Dermatologist and pediatrician 9 180 3Italy 3 9

United Kingdom 1 9 30 Dermatologist and nurseUnited Kingdom 2 9 90 3France 1 9 45 Dermatologist and nurse 9 180 3France 2 9 45 Dermatologist and nurseFrance 3 9 90 Dermatologist and nurse 9 180 3France 4 9 45 Dermatologist and nurseSpain 9 3Japan 1 9 2Japan 2 9 8Belgium 1 9 30 Dermatologist and pediatrician 9 120 1Belgium 2 9 30–60 Dermatologist and pediatrician 9 90 1United States 1 9 120 6United States 2 9 Dermatologist and nurse 9

Switzerland 9 120 5

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interactive educative tools, only five centers (SaoPaulo, Milan, Nantes, San Diego, and Chicago)o!ered on-line support (eg., videos, podcasts). O"cialTPE recommendations have been published in Can-ada, Germany, the United Kingdom, and France.

Patient progress was evaluated mainly according toa clinical score: Scoring AD (SCORAD) index,Eczema Area and Severity Index (EASI) score, orDermatology Life Quality Index. After each work-shop, the patient or the parent completed an overallsatisfaction evaluation. Economic items were notevaluated in any of the centers.

Organization

The composition of the TPE team was often inter-professional and always interdisciplinary. Physicians(dermatologists, pediatricians, allergists), nurses, psy-chologists, and dieticians were involved in the educa-tional process. The TPE team received training in 15of 23 centers. Even though these TPE programs wereproposed in hospital settings, private practitionerswere involved in some centers (8/23).

The relationship with private dermatologists andother healthcare providers involved with the patientwas variable. In theory, each doctor is informed of hisor her patient’s progress. The private practitioners,who were involved in the hospital team (8/23), thenused the TPE program in their own practice. Ten of 23centers mentioned cooperation with other TPE teams(e.g., asthma, allergy).

Funding is an important point in the setting up ofeczema centers (Table 3). When funding had beenobtained, it was indirect, for example, the nurse’s ordoctor’s salary was paid by the hospital or organiza-tion, or direct, meaning it was obtained from insur-ance companies, charity donations, fundraising, orgrants from pharmaceutical companies. Cooperationwith patient associations was active in eight of 23centers (Brazil, Germany, UK, US).

DISCUSSION

In dermatology, AD treatment failure is linked to poortherapeutic adherence and the fear of using anti-inflam-matory agents. These phenomena have led to severalnew initiatives around theworld in the field ofAD.TPE,as defined according to the WHO (1), is a continuousprocess of patient-centered medical care. This approachempowers patients to manage their disease by acquiringskills (e.g., self-management, treatment adaptation).

All 23 centers contacted responded to the ques-tionnaire. The TPE o!ers3 of the 23 centers contacted

included an individual and a more-collectiveapproach. Individual TPE consists of personal ses-sions during which the patient’s needs and expecta-tions are identified and the practical skills they have toacquire and their learning priorities are established(written action plan). This approach is useful becauseit enables the doctor to establish the patient’s overallprofile rapidly so as to customize the TPE program.Another major advantage of individual sessions isthat doctors in private practice or nurses in clinics caneasily organize them. The limitations of the individualapproach reflect the resources needed (time) and thelack of interpatient advice and exchanges.

The survey identified two forms of collectivesessions. The first consists of multi-annual workshopsfor more than 100 people. The audience may includeparents with children, adult patients, and adolescents.After initially providing general information on AD,less-formal interactive audience participation canoccur. These meetings may be monthly (Brazil) ormulti-annual (Denmark). For patients, these sessionsare often the first contact they have with TPE, and themeetings may lead to individual follow-up sessions(Chicago) or structured workshops (Canada andFrance). This approach is a powerful and e"cientway to disseminate information to large numbers ofpatients. It is also a good way to motivate patients tobecome involved in a more-structured TPE program.

TABLE 3. Funding According to Center

Center Indirect Grants Insurance Charity None

Brazil 9 9

Canada 9

Denmark 9

Germany 1 9

Germany 2 9

Germany 3 9

Italy 1 9

Italy 2 9 9

Italy 3 9

UnitedKingdom 1

9

UnitedKingdom 2

9

France 1 9 9

France 2 9

France 3 9 9

France 4 9 9

Spain 9

Japan 1 9 9 9

Japan 2 9

Belgium 1 9

Belgium 2 9 9

United States 1 9

United States 2 9 9 9

Switzerland 9

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Alternatively, more-formal and -structured TPE isused. According to the Berlin model (6), the programsdeveloped for collective sessions are structuredaround several themes: know your illness better(origins, treatments, triggering factors), acquire prac-tical skills (when, where, and how to apply treatment),and living with your disease (explaining your diseaseto others, asking for help during a flare). Thisstructured collective approach has been extended toother countries: France, where recommendationswere published (8), and Italy, where several atopicschools were created after the first meeting in Milan in2008 (9).

The tools used in the TPE sessions vary from onecenter to another. Several hospitals, nonetheless, usedsimilar metaphors, such as a burning house for a flare(Italy, France, and US), or a fireman for corticoster-oids (France, Italy, and Belgium). These tools, oftencreated by the TPE teams, include a bus adventure(improving adherence), puppets (identifying symp-toms), photo expression (encouraging communicationin collective sessions), and songs (remembering pro-cesses).4

The number of participating patients also variedfrom one center to another. The di!erence betweenthe hospitals that integrated education into thenormal care process (Germany, France, Belgium,US) and those in which education was based oninformative presentations (Japan) may explain thisvariation.

Evaluation of TPE was mainly evaluated usingclinical and QoL scores, but we were not able tocollect more-precise data (e.g., patient skills, treat-ment adherence). Evaluation of TPE is an importantstep, albeit a di"cult one, and only a few centers havebeen able to publish their data (9,11). The GermanAtopic Dermatitis Intervention Study (GADIS) wasthe first to demonstrate TPE e"cacy using evidence-based criteria by determining the e!ects of age-related, structured TPE on the management ofmoderate to severe AD in children and adolescentsin a multicenter, randomized controlled trial (11).The GADIS results showed that, compared withstandard care, six group sessions of 2 hours per weekresulted in sustained attenuation of AD severity, asassessedwith theSCORADindex, andbetterQoL(12).

Most of the eczema centers were created on thebasis of personal initiatives without any direct finan-cial aid. Setting up TPE depends mostly on thefederating power of individual leaders or “experts,”who in turn enable motivated team members to beinvolved in AD education. The means attributed toTPE in the institutions are almost nonexistent or

otherwise linked to grants from pharmaceutical com-panies or patient associations or their fundraising,although in accordance with selective criteria, theFederal Ministry of Health in Germany and theregional health agencies in France o"cially recognizeeczema centers or atopic schools.

This inquiry had some limitations. The centersincluded in the survey were selected according toarticles published between 2009 and 2010. Consider-ing the recent rapid development of TPE around theworld, the centers included in the study do notrepresent an exhaustive overview of the educativeapproaches in TPE for AD, and considering the recentrapid development of TPE around the world, it couldnot, in consequence, be exhaustive.

Compared with diabetes or cardiovascular TPEprograms, the lack of o"cial recommendations in ADprograms is significant. Without validated recommen-dations, most hospitals are not in a position to o!er aformal and recognized program for their team such asthe asthma or diabetes centers can o!er. OnlyGermany and France had o"cial training programsfor the TPE team members. International consensusrecommendations for TPE for AD patients are beingprepared.

Patient associations are also often powerful lobbiesand have fundraising possibilities. In the UnitedKingdom and the United States, large patient asso-ciations play a primary role and can be contactedthrough their web sites.

Finally, the evaluation of TPE is an importantpoint before obtaining formal recognition of theeducational process from the relevant health author-ities (13). Medico-economic evaluation in AD is moredi"cult to accomplish than with severe asthma ordiabetes. The integration of the new self-assessmentscores, such as patient-oriented SCORAD (14) orSelf-Administered EASI (15), could provide a regularfollow-up of the patient’s eczema course betweenconsultations. In the future, these tools will be animportant aspect of assessing TPE because they willprovide investigators with access to continuous self-assessments of the e!ect of TPE on the patient’s ADmanagement (16). Moreover, the medico-economicapproach to TPE must be explored in light of the highfinancial e!ect of severe AD.

Despite the cultural di!erences between countries,the OPENED experts’ consensus that TPE must beintegrated into AD patient-centered medical care hasled them to prepare common recommendations tofacilitate the performance of future multicenter studiesand better evaluate the real e!ect of TPE on themanagement of individuals with AD. Furthermore,

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comparative studies could help identify specificmodal-ities that would be more e!ective than others inachieving the aim of improving patients’ and parents’confidence and competence in managing chronic AD.

ACKNOWLEDGMENTS

Members of OPENED: T. Diepgen, Thibautstraße 3,Heidelberg, Germany; M. El-Hachem, Department ofDermatology, Ospedale Pediatrico, Rome, Italy; J.P.Lacour, Department of Dermatology, Archet Hospi-tal, Nice, France; T. Werfel, Dermatology and Vene-reology Clinic, Hannover, Germany; K. Jackson,St. John’s Institute of Dermatology, St. Thomas’sHospital, London, United Kingdom; A. Torrelo,Department of Dermatology, Hospital del NinoJesus, Madrid, Spain; M. Furue, Department ofDermatology, Kyushu University, Fukuoka, Japan;D. Munch, Swiss Centre for Allergy, Skin andAsthma, Berne, Switzerland; M. Takigawa, Depart-ment of Dermatology, Hamamatsu University Schoolof Medicine, Hamamatsu, Tokyo, Japan; M. Morren,Department of Dermatology, Katholic University,Leuven, Belgium; G. Ricci, Department of Pediatrics,University of Bologna “Gozzadini” Children’s Hos-pital, Bologna, Italy. This study was supported by aresearch grant from the Fondation pour la DermatiteAtopique (Toulouse, France).

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