Chronisch Vermoeidheidssyndroom: diagnose, behandeling en ...

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88 Chronic Fatigue Syndrome KCE reports 88 Evidence on effectiveness of Disease Management Programs (DMPs) in improving care for people with chronic conditions 182 has been reviewed by the WHO (HEN-report 2003). Again, the same elements included in the 3 models for chronic care management are found to be key components of the DMPs. It is concluded that DMPs, although differently implemented in different settings, improve the management for some chronic conditions (diabetes, depression, cardiovascular diseases) as measured by performance indicators e.g. adherence to guidelines. However, no evidence exists yet that specific DMPs improve the survival rate or quality of life. A systematic review by Ofman et al. 183 in 2004, in which experimental studies from 11 chronic conditions were included, came to the same conclusion, adding that no reduction in cost could be demonstrated. An important remark was that “results” of a DMP, when compared to “usual care” likely depend on the underlying health care system. 7.2.1.5 A Model of care for Chronic Fatigue Syndrome: conclusion So far, no specific model of care for Chronic Fatigue Syndrome has been described in the literature. Three models of care for Chronic Conditions were found, sharing many elements in common, like emphasis on multidisciplinary care and comprehensive care strongly involving community services, integrated care and care coordination, the promotion of health-education and self-care, and a plea for the use of evidence-based guidelines and the use of information technology. This is not surprising, since the second and third model were developed taking the first model into account. The fourth model, the Disease Management Program (DMP), although primarily not developed for chronic conditions, emphasizes the same core elements as the three models for chronic care. From the three models for Chronic Care that were found, the CCM has been mainly used to describe, introduce or study changes in the care of chronic conditions, and in several countries. Its components will be used to guide the comparison of the different CFS care modalities used in the selected Western countries. 7.2.2 Systematic review of management strategies for CFS patients in secondary versus primary care During the search for evidence on the organisation of care for CFS, one systematic review was found discussing first level and second level care for CFS, irritable bowel syndrome and chronic back pain, and was retained for separate discussion. 184 One more RCT on CBT in primary care for CFS patients was retrieved, 91 but in this trial group CBT was evaluated, so direct comparison with trials in which individual therapy had been provided is difficult. Another RCT evaluated CBT by general practitioners in a group of employees with unexplained fatigue, of whom 44% met the CDC-criteria of CFS at inclusion. 185 However, the CBT in this RCT was of much lower intensity (5 to 7 sessions of 30 min each) as compared to the CBT offered in the secondary-care studies mentioned in the review of Raine et al. 184 In the review of Raine et al. 184 3 randomised controlled studies (RCTs) on GET in secondary care were included, but no RCT in primary care. Four respectively one RCT(s) on CBT in secondary respectively primary care were included. It was concluded that CBT seems to be effective in secondary care patients (short term follow-up), and one study suggested that results of CBT and counselling in primary care might be equivocal (however, only 6 sessions of CBT or counselling were provided, as opposed to the 13-16 hours of CBT offered in the secondary-care studies). No definitive conclusions on effectiveness in secondary versus primary care can be made. 7.3 DEVELOPMENT OF A QUESTIONNAIRE AND SELECTION OF COUNTRIES As described in the previous paragraph, the Chronic Care Model (CCM) had been selected to guide the comparison of the different CFS care modalities used in the selected Western countries.
KCE Reports 88 Chronic Fatigue Syndrome 89 However, the Chronic Care Model defines general organisational principles, rather than specific rules on how to describe comprehensively care organisation in a certain country. Therefore, in agreement with the Process Notes on Health Services Research used by the KCE, the template for health system analysis published by the European Observatory on Health Systems and Policies 186 was used to develop the basis for the questionnaire that would be used to look for information on the selected Western countries. Elements of the Chronic Care Model not clearly represented in this general document, were added. Before it was finally adopted for use, the questionnaire was discussed with 2 other KCE researchers and with the president of the CSF/ME Working Group of the Belgian Superior Health Council (Benjamin Fischler, MD, PhD). The final questionnaire is presented in the Appendix 2A. Following questions were addressed: • Is incidence or prevalence of CFS known in other countries? • How are CFS patients taken care of? Are there any specific structures or services available for CFS patients? • If so, which professionals take care of CFS patients? Which diagnostic procedures and/or therapeutic programs are provided? Is scientific evidence taken into account? Is outcome registered or studied? • Who is paying for these structures/services? What is the role of public funding? Patient out-of-pocket payments? • What are therapeutic possibilities if no specific services are provided? • How well does the provided care fit the elements of the Chronic Care Model? • How are children or adolescents with CFS looked after? • How are severely affected patients looked after? • Are there special initiatives promoting return to work? For the selection of countries, it was decided to discuss Western developed countries that were at least interested in care for CSF/ME. Countries for which already scientific work or other documents on CFS had been found, as an indication of some interest going on in the field, were selected. Contact persons of these countries, known to the experts participating in this study, were asked for their contribution in the project. Next, a list of scientists willing to contribute to a future European project on CFS n was consulted. After this process, persons from the UK, the Netherlands, Italy, Norway and Australia were found willing to cooperate. They were sent the questionnaire (for a list of contact persons, see Appendix 2B). Because only very few documents including official data were found, the numbers mentioned in this part of the study are expert estimations unless otherwise mentioned, and should be viewed with caution. 7.4 UNITED KINGDOM: ENGLAND 7.4.1 The CFS Service Investment Programme: Summary The CFS Service Investment Programme, started up in 2004 in England by the NHS, and evaluated in 2006, has been the main source of the description given in this report. It is completed using information from experts in England, as listed in the Appendix 2B. Other UK regions are not (yet) covered by the CFS Service Investment Programme. The total NHS funding for 2004-2006 amounted to 8.5 million English Pounds (£) (about 10.8 million Euros). This NHS funding has now been taken over by local trusts and/or private initiatives, in line with the general structure of the British health care system. Few CFS teams report that local Trusts are not willing to continue to fund services, which threatens further activities of the team. n list provided by one of the experts, Mrs Greta Moorkens, M.D., PhD, Head of the Department of Internal Medicine, University Hospitals Antwerp, Belgium.
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