Long-term follow-up strategies for people with chronic diseases
Symposium organized by Jean-Philippe Assal, from 27 Мarсh — 3 April 2001
Allaz Anne-Françoise (University Hospital, Genève, Suisse), Almeida Pedro (Médecine privée, Portugal), Assal Jean-Philippe (University Hospital, Genève, Suisse), Barrea Thierry (Clinique universitaire Saint-Luc, Bruxelles, Belgique), Copple Lisa (World Health Organisation, regional office for Europe, Copenhague, Danemark), Dayer-Metroz M. Dominique (University Hospital, Genève, Suisse), Dupuis Patricia (Infirmière, coordinatrice du programme romand «Formation du soignant », Lausanne, Suisse), Euller-Ziegler Liana (L’Archet University, Nice), Gold Gabriel (University Hospital, Thonex, Suisse), Halimi Didier (Médecine privée, France), Hernandez-Huet Enric (Institut Català de la Salut, Barcelone, Espagne), Kalo Isuf (World Health Organisation, regional office for Europe, Copenhague, Danemark), Kaser Mélodie (University Hospital, Genève, Suisse), Kleinebreil Line (Hôtel-Dieu, Paris), Lacroix Anne (Psychologue privée, France), Maldonato Aldo (Policlinico Umberto I, Rome, Italie), Meiri Hamutal (Israel Education Highway, Tel-Aviv), Montreuil Chantal (Centre hospitalier universitaire vaudois, Lausanne, Suisse), Musacchio Nicoletta (Hospital Bassin, Milan, Italie), Paré François (Faculté de médecine, Angers), Pas Léo (Médecine privée, Belgique), Postel-Vinay Nicolas (Faculté de médecine, Paris), Schloesser Corinne (University Hospital, Genève, Suisse), Visser Adriaan (The Helen Dowling Institute for Biopsychosocial Medicine, Utrecht, Pays-Bas), Weisselberg Claude (Laboratoires Aventis, Paris).
Reasons for the meeting
At the request of Dr Josep Goicoechea, Director of the Country Health Division of the World Health Organisation Regional Office for Europe in Copenhagen, Denmark, a WHO Working Group Meeting was organised by the Division of Therapeutic Education for Chronic Diseases, a WHO Collaborating Centre. The air of the Working Group was to prepare an official WHO document on “Long-term Follow-up Strategies for People with Chronic Diseases and Implementation of Therapeutic Education Programmes”.
WHO has already addressed the issue of “Therapeutic Patient Education” (ТРЕ) in the 1988 WHO Working Group Report (continuing education programmes for healthcare providers in the field of prevention of chronic diseases) which has been translated into several languages and widely distributed within Europe and beyond.
This sector of “Long-term Follow-up Strategies” urgently needs to be developed. In the definition of “Therapeutic Patient Education” WHO Euro has highlighted the importance of the concept of continuity during the course of the disease (sec “The Definition of ТРЕ” below). At the present time, almost no document exists which is focused purely on the management of long-term follow-up. Since approхimately 80 chronic diseases and conditions to which this sector would apply have been described in the 1988 Report, this new Report would be eхtremelу useful, not only for patients but also for healthcare providers and health poliсy planners.
Scope and Purpose
The quality and outcome of long-term care of persons with chronic diseases in all countries are generally far from optimal, creating a hеavy burden on health systems. Consequently, major efforts should be made in reforming and improving the quality of health systems, health services and health care provision in order to:
- help persons with chronic diseases cope with their illness and better adhere to their treatment,
- help persons with chronic diseases to achieve and maintain remission and prevent complications and relapses more efficiently,
- improve communication between health care providers and persons with chronic diseases,
- provide and continuously improve therapeutic education of persons with chronic diseases and their families,
- design and master long-term follow-up strategies which should comprise simultanеouslу the biomedical and psychosocial dimensions of the disease and focus on its bearеr, the person with chronic illness.
In continuation of this effort, the Regional Office, jointly with the WHO Collaborating Centre at the Division of Therapeutic Education for Chronic Diseases at the University Hospital, Geneva, organised this meeting in order to produce a report with recommendations on more comprehensive long-term follow-up strategies which comprise a new vision and the responsibilities of health systems in the provision of care of persons with chronic diseases.
Definition of Therapeutic Patient Education
The World Health Organisation Regional Office for Europe has defined Therapeutic Patient Education as follows:
Therapeutic patient education should enable patients to acquire and maintain abilities that allow them to optimally manage their lives with their disease.
It is therefore a continuous process, integrated in health care.
It is patient-centred; it includes organised awareness, information, self-care learning and psychosocial support regarding the disease, prescribed treatment, care, hospital and other health care settings, organisational information, and behaviour related to health and illness.
It is designed to help patients and their families understand the disease and the treatment, co-operate with the healthcare providers, live healthily and maintain or improve their quality of life.
A total of 23 European experts attended this three-and-a-half day meeting held as an interactive workshop. It comprised both doctors and nurses coming from various fields such as arterial hypertension, asthma, diabetes, geriatrics, neuro-sciences, psychiatry, rheumatology, etc. Some work in a hospital setting, others are general practitioners or home-visiting nurses. Ail have had from ten to thirty years’ experience working with chronic patients.
The interactive workshop
This workshop was opened by Prof. Isuf Kalo, the Regional Adviser of the Quality of Care and Technologies Unit of WHO-Euro. During the following three-and-a-half days intensive small group discussions were held, each followed by a general round table on the various aspects of long-term follow-up strategies. Time was also allowed for the writing and editing of reports and recommendations of the various groups.
The themes of those discussions covered:
Long-term follow-up of patients
- description of personal and general difficulties encountered in medical practice with chronic patients
- general round-table presentation of problems as previously given by participants
- grouping these difficulties according to specific themes
- recommending solutions for prevention and better management when difficulties occur
Global approach to the care of the chronic patient
- what does this entail?
- how to include this dimension in pre-, post-, and continuing education?
- which aspects to evaluate in this process of care?
- which strategies to implement?
- for patients
- for hcps
- which aspects to evaluate in this process of care?
Which global follow-up according to specific diseases and conditions?
- each participant has to select a disease, or condition, in which he or she has experience
Which strategies and recommendations to present for the implementation of active long-term follow-up?
- critical evaluation of the various texts proposed for WHO
Fighting monotony, repetition and burnout in the medical practice
- propositions for avoidance
The new WHO Report:
“Long-term follow-up strategies for people with chronic diseases” At the end of the workshop, a provisional working document had been produced with the above-mentioned topics contained in the chapters listed below. After this programme particular attention WHO be given to training programmes of healthcare providers, both at the pre-graduate and the continuing education level.
Healthcare systems: incorporating new strategies for long-term follow-up
Forging a new partnership: the patient as an expert in the healthcare
Teamwork, expanding the frontiers of traditional care
Therapeutic patient education: an added value for therapy
Implementing training programmes, including:
- Training healthcare professionals in long-term follow-up
- Training healthcare professionals in bio psycho-social dimensions
New research avenues to improve long-term follow up, including:
- Reorientation of research programmes, Motivation, and Burnout in long-terra health care
This draft document is in final preparation before being submitted to WHO-Euro and WHO headquarters for approval and publication.
- ALLAZ, Anne-Françoise, MD, PD, Department of Medicine, Beau-Séjour, University Hospital, Geneva, Switzerland.
- ALMEIDA, Pedro Pereira de, MD, General Practitioner, Santarem, Portugal.
- ASSAL, Jean-Philippe, MD, (convenor), Head of Division of Therapeutic Education for Chronic Diseases, WHO Collaborating Centre, University Hospital, Geneva, Switzerland.
- BARREA, Thierry, RN, Service Diabeto-paediatrique, Clinique Universitaires Saint-Luc, A.S.B.L., Brussels, Belgium.
- DAYER METROZ, MD, Chef de clinique scientifique, Division of Therapeutic Education for Chronic Diseases, University Hospital, Geneva, Switzerland.
- DUPUIS, Patricia, RN, Lausanne, Switzerland.
- EULLER ZIEGLER Liana, MD, Rheumatology Department, L’Archet University, Nice, France.
- GOLD, Gabriel, MD, Department of Geriatrics, University Hospital, Тhônex, Switzerland.
- HALIMI, Didier, MD, Director, International Scientific Communications, Servier International, Neuilly-sur-Seine, France.
- НERNANDEZ-HUET, Enric, MD, General Practitioner, La Garriga, Barcelona,
- KALO, Isuf, MD, Regional Advisеr, Quality of Health Systems, WHO Regional Office for Europe, Copenhagen, Denmark.
- KLEINEBREIL, Line, MD, Director, WHO Collaborating Centre, Diabcare France, Paris, France.
- LACROIX, Anne, Psychologist, Saint-Julien, France.
- MALDONATO, Aldo, MD, Inst. Clínica Medica 2, Policlinico Umberti I, Rome, Italy.
- MEIRI, Hamutal, Ph.D., Chairman of Israel Education Highway, Director of Israel Telemedicine Industry Forum, Tel Aviv,
- MONTREUIL, Chantal, RN, Division d’endocrinologie et du métabolism, CНUV Lausanne, Switzerland.
- MUSACCНIO, Nicoletta, MD, Servizio di Diabetologia V Massimo Gorky, Hospital Bassin, Milano,
- PARE, Françoise, MD, General Practitioner, Château-du-Loir, France.
- PAS, Leo, MD, General Practitioner, Wezmbeek Oppem, Belgium.
- POSTEL VINАУ, Nicolas, MD, General Practitioner, Service de santé publique et d’informatique médicale, Paris, France.
- SCНLOESSER, Corine, MD, Psychiatrist, Division of Therapeutic Education for Chronic Diseases, University Hospital, Geneva, Switzerland.
- VISSER, Adriaan, Ph.D, Health Psychologist & Senior Researcher, European Editor, Patient Education & Counseling, The Helen Dowling Institute for Biopsychosocial Medicine, Utrecht, The Netherlands.
- WEISSELBERG, Claude, MD, President, Head of Cardiovascular & Diabetes Business Unit, Laboratoires AVENTIS