Chronisch Vermoeidheidssyndroom: diagnose, behandeling en ...

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84 Chronic Fatigue Syndrome KCE reports 88 7 ORGANISATION AND FINANCING OF CFS CARE IN OTHER COUNTRIES 7.1 INTRODUCTION When concepts of patient care are developed, each country has to take into account its own specific context due to variables in local circumstances, legislation, or cultural concepts, which all influence the way in which care to patients is or can be provided. Nevertheless, it is worthwhile to study the experience of other countries in management of CFS patients: it can deepen our understanding of organizational, administrative and financing policies and it can lead to new options for care organization. First, to support the comparative description of care for chronic fatigue syndrome (CFS) in all investigated countries, an organisational model of care for this patients’ group was looked for in scientific and grey literature sources (see 7.2) Next, a questionnaire was developed and the 5 countries that would be investigated were selected (see 7.3). The questionnaire was sent to contact persons in these countries, and the returned information was summarized for each country (see 7.4 to 7.8). A comparative table of the described countries including Belgium was made, and conclusions were drawn (see 7.9). 7.2 A MODEL OF CARE ORGANISATION FOR CHRONIC CONDITIONS 7.2.1 Organisation of care for CFS: a Model for Chronic Conditions In December 2007, CRD-databases, Medline (PubMed) and grey literature sources were searched for evidence on organisational models proposed to take care for CFS patients (for search strategy, see Appendix 1). However, evidence on this topic is scarce and no description of an organisational model for CFS was found. Alternatively, the same databases and sources were searched for existing organisational models for chronic conditions as a whole (for the search strategy, see Appendix 1). Models for geriatric care were not taken into account, since the typical CFS population is of a much younger age. Three organisational models were found: the Chronic Care model, 168 the ICCC framework (Innovative Care for Chronic Conditions, WHO 2002), and the New Zealand Chronic Care Management Programme. 169 Finally, studies discussing the outcomes of Disease Management Programs in chronic disorders were also found.
KCE Reports 88 Chronic Fatigue Syndrome 85 7.2.1.1 The Chronic Care Model Figure 2. The CCM or Chronic Care Model 170 The Chronic Care Model (Figure 2) has been developed and described by Wagner, in 2001. 168, 170 The CCM is made up of six major elements: community resources, the health care system surrounding the provider organization, patient self-management, decision support, delivery system redesign, and clinical information systems. 171 In several countries, this model has been used to describe, introduce or study changes in the care of chronic conditions, e.g. Chronic Obstructive Pulmonary Disease or diabetes. 171,172, 173,174-177 A brief, validated patient self-report instrument, the Patient Assessment of Chronic Illness Care (PACIC), exists which assesses the extent to which patients with chronic illness receive care that aligns with the Chronic Care Model (this care should be patient-centred, proactive, planned, and should include collaborative goal setting/problem-solving and follow-up support). 178 In 2005, a meta-analysis assessed whether CCM interventions improved outcomes for specific chronic illnesses. It was concluded that clinical outcomes, processes of care, and to a lesser extent quality of life, were improved in patients receiving at least one element of the CCM; but these findings might not be reliable given the limitations in the review methods. 179 The Policy notice m 7.2.1.2 by the Department of Health of the UK “Supporting people with long term conditions: An NHS and social care model to support local innovation and integration”, published in 2005, aims to provide a framework for the treatment of long term conditions. It draws on the ‘chronic care model’ researched and applied by Wagner and colleagues in Seattle, USA. The ICCC framework The Innovative Care for Chronic Conditions framework or ICCC framework (Figure 3) was developed by the WHO in 2002 starting from the CCM or Chronic Care Model. 180,181 It expands community and policy aspects of improving health care for chronic conditions and includes components at the micro (patient and family), meso (health care organisation and community), and macro (policy) levels. m http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252
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