Chronisch Vermoeidheidssyndroom: diagnose, behandeling en ...

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98 Chronic Fatigue Syndrome KCE reports 88 Key points • No prevalence of CFS in Italy is known. • Three general centres provide diagnostic possibilities; four specific centres also provide time-limited treatment and follow-up. No specific services for children exist. • Number of CFS-patients seen: about 1 / 100 000 Italian inhabitants (based on expert opinion). • Diagnosis by one of these centres is necessary to be recognised as CFSpatient. • Treatment is on outpatient, individual basis; one centre also admits patients. Group sessions are not available. • Family and patient information sessions on CFS are available; as well as time-limited psychotherapy. • Evidence-based treatments for CFS, like CBT and GET, are not yet available. • Contacts with primary care are as usual among physicians; centres do not provide outreach to bedridden patients or support/ teaching to local health or social workers. • Reimbursement of centres and acts is according to the national health insurance system, without specific conditions or restraints for CFS. One centre (Pavia) is funded by charity. • No Italian guidelines are available. 7.7 NORWAY No specific Norwegian prevalence numbers for CFS are available. Norway has 3 University hospitals (third-line) where CFS patients are seen, as part from routine neurology/ infectious diseases/ paediatric practices: 2 for adults (Oslo and Bergen) and one for children (Rikshospitalet, Oslo). 7.7.1 CSF/ME care for adults The adult centres provide diagnosis, coping classes, and some limited individual therapy. Activities are usually on an outpatient basis. For the CFS service of Oslo in the Ullevaal University Hospital, covering approximately half of the Norwegian population, it is estimated that on average 350-400 patients per year are seen/ treated, of which about 300 new patients. Of the new referrals, approximately 2/3 gets the diagnosis of CFS. The adult service in Bergen (Haukeland University Hospital) grew mainly after a generalised Giardia infection of the main water supply some years ago, infecting many people. Afterwards, a peak in CFS prevalence was noticed. Since Norway has about 4.7 million inhabitants, it can be estimated very roughly based on the Oslo numbers that yearly about 16 adult patients for 100 000 inhabitants are seen in these two adult centres. However, diagnosis can be set by other medical specialists as well. Diagnosis is mandatory to be recognized as a CFS patient. Apart from the two University centres, most large hospitals throughout the country provide general rehabilitation programs for all sorts of diagnoses. Included are “Coping centres”, specific services for chronic disorders of different kinds. CFS patients can also get services in these Coping centres. Information for this study on the current working of the adult University CFS services (e.g. numbers used in the next paragraphs), could be obtained from the Oslo Ullevaal University Hospital. So far, patients need a referral from a medical doctor to be seen in the University hospital. The waiting list is about 9-12 months. Coping course/classes for patients are provided (8 times 2 hours; maximum 15 patients); the patients are allowed to bring one relative or care taker on the day the doctor talks about what CFS is. Information meetings (3 hours) are also arranged twice a year, where relatives and care takers can
KCE Reports 88 Chronic Fatigue Syndrome 99 come. The coping course/class is based on teaching patients pacing techniques and energy economizing (occupational therapist), deep relaxation (physiotherapist), knowledge about the disease (doctor), conversation with psychiatric nurse about reactions to being ill and coping, information about healthy food for patients with CFS (nutritional expert) and information on how to obtain social security money for people who have been away from work more than one year and how they can get financial support for technical aids. In the near future, classes based on CBT and GET techniques will be started up, as part of a research project. Individual therapies (general psychotherapy, physiotherapy, pacing, occupational rehabilitation, self-care programs and eventually alternative therapies (homeopathy…) are possible, but usually classes are provided. All these therapies, including CBT and GET but excluding pacing are also available for CFS (and other patients) outside the University centres, but only scarcely. Educational sessions on CFS are also available outside the centres. For severe cases, assessment and treatment can be delivered at home by the University hospitals; limited telephone support is also available. Apart from the national service for children in Rikshospitalet (see further), the Oslo Ullevaal University Hospital also provides a coping class for children and parents. Reimbursement is given for the whole period of the classes (8 weeks), and for the medical consultations/acts in the hospital. Individual therapy in the hospital is reimbursed if patients get the service as part of the coping classes. Otherwise it has to be financed by the hospital’s regular budget, except for psychotherapy which is not reimbursed. Reimbursement is not time-limited. Reimbursement for therapy outside the University hospitals is provided under the general health care system, without specific conditions or restraints for CFS patients compared to other diseases. Educational sessions on CFS are not reimbursed. 7.7.2 CFS care for children and adolescents The interest for CFS in children and adolescents at the University Hospital of Oslo (Rikshospitalet), started almost six years ago, and initially was purely scientific. However, soon thereafter, other children’s hospitals in the country started to refer their patients, and clinical services were started up. Nowadays, all other Norwegian children’s hospitals belong to the Rikshospitalet’s network. In 2007, approximately 80 patients were seen. The team nowadays consists of 2 paediatricians (involved for 20% respectively 40% FTE), a nurse (50% FTE); as well as an occupational therapist, physiotherapist and dietician (each for 30% FTE available). A child psychiatrist can be consulted in Rikshospitalet if necessary, but it is required that the child has been seen by a child psychiatrist in the local hospital before referral. Given the absence of definite scientific criteria for CFS in children, the team agreed on the following criteria to make the diagnosis of CFS: the child has been fatigued for at least 3 months (but usually fatigue already exists for at least 6 to 7months), without other conditions causing the fatigue; the fatigue should be “severe”, i.e. it should have caused absence from school for a considerable time period. Children suffering from fatigue due to a medical condition e.g. cancer treatment, are seen as well, but rather exceptionally. After referral, patients stay 2 days in the hospital for a multidisciplinary evaluation. The parents are not charged for this service (don’t pay anything). At the end of these two days, the results are discussed extensively with the parents and if possible with the child. A treatment planning is proposed, and contact persons in the child’s neighbourhood are proposed that can be contacted to provide the therapy (on an individual basis). Usually an adapted form of GET is provided, in which gradual increase of a broad range of activities is proposed, according to the age, possibilities and the interest of the child. CBT can be proposed as well, but is less readily available. At home, the planning agreed on is taken over by the local paediatrician or community service. The child is seen every 2 or 3 weeks and activities increased if possible. So far, no systematic follow-up in the Rikshospitalet is provided, but this will be established in the nearby future. 7.7.3 New initiatives as from 2007 In 2007, a report has been published on the care of CFS in Norway. Since clear information (e.g. numbers of patients) on organisation of care was scarce, and since apparently some Norwegian regions had almost no services in place for this group of
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