Chronisch Vermoeidheidssyndroom: diagnose, behandeling en ...

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92 Chronic Fatigue Syndrome KCE reports 88 Most therapies are time-limited (e.g. 8 weeks for group therapy, 12 sessions fortnightly with a cognitive behavioural psychotherapist and 24 sessions fortnightly with a clinical psychologist). Usually follow-up is provided, e.g. at 3, 6 and 12 months after intervention. Examples of therapy provided are GET, CBT, pacing, relaxation, stress management, energy management, sleep management, strategies for memory and concentration, managing set backs. No information has been found on which therapy model prevails most. The general impression is that most services providing CBT or GET use a model adapted to the specific needs of CFS persons. One centre, the CFS Research and Treatment Unit of King’s College, London, exclusively offers CBT or GET. Their therapy manual q can be found in the Appendix 5. The same centre is also participating in a multi-centre RCT on pacing. A Group program Manual from the Leeds and West-Yorkshire CFS service (9 weeks, 1 meeting/week) is available at www.CFSpod.net. However, unlike the manual of the King’s College Team, this group manual has not proven yet its therapeutic value in a scientific trial, preferably a RCT. Not much information has been found on projects set up specifically for occupational rehabilitation or employment issues, although these problems can be dealt with in the provided therapies (e.g. CBT, counselling…). A national guideline is provided by NHS-Plus r . For the severely affected (home- or bedridden) persons, 27/36 LMDTs provide at least some intervention for this group. Domiciliary assessment is available in most of these 27 teams; some teams also provide rehabilitation, usually only during a limited time period and in collaboration with local therapists or community services. Recently initiatives have been taken to link these services with other NHS-initiatives for management of long-term conditions (MLTC), which also raised the question whether case management should be started. It should also be mentioned that eight national CFS inpatients beds are available (Essex Neuroscience Team); inpatient service is also possible in some other hospitals. OTHER SERVICES Telephone contacts, supportive e-mails or help-lines are often provided. The CFS Research and Treatment Unit of King’s College, London, is conducting a RCT on telephone/postal CBT. In many LMDTs leaflets, books, self-care diaries, information on patient support groups or websites are available. The NHS supports group programs that reinforce self-help in patients (“NHS Professional led Programme”). Many services provide patients with a group programme manual or session handouts, to reinforce course content. The EPP or Expert Patient Programme (a generic lay-led group workshop) was introduced into the NHS in 2001. A trial for 34 CFS patients, yielded mixed feedback regarding the suitability of the program for CFS. Many Self-help groups exist, based on initiatives of patients themselves who meet or “chat” to offer each other practical and emotional support. 7.4.1.5 Provided services for children and young persons A number of Specialist Teams for children and young people have identified treatment possibilities within generic paediatric services, providing a central role for the local paediatrician. Other Specialist Teams provide direct care to the patients. Some teams have paediatric services utilising resources within the adult team. Links with local youth therapists are provided in some teams. According to the available information, rehabilitation for children and young people can include CBT, pacing and/or GET. It is more often on an individual basis as compared to q A more extended version of the therapy manual can be found in two books: “Overcoming chronic fatigue” (Burgess, Chalder); “Coping with chronic fatigue” (Chalder) r ‘Occupational Aspects of the management of CFS: a National Guideline’ www.nhsplus.nhs.uk
KCE Reports 88 Chronic Fatigue Syndrome 93 adults’ rehabilitation. Also, domiciliary services seem to be more common than in CFS adults. However, age- and severity-specific groups for children exist, as well as parentsupport groups. Attention is being paid to inform school and teachers. 7.4.1.6 Outcomes Registration of a Minimal Data Set (MDS) started April, 2006; data are collected locally; the national process of central collection has not yet been finalized. The data has to be collected when the patient is first seen by the service and again (only once) between 9 and 15 months after the first assessment. The following items are included: demographic information including employment or educational status, clinical information related to diagnosis, and validated outcome scales (on severity of symptoms (Chalder Fatigue Scale), mood (Hospital Anxiety and Depression Scale; HADS), pain severity (Visual Analogue Scale for Pain), physical function (SF36 Physical Function), perceived improvement (Clinical Global Improvement Scale). One service, the CFS Research and Treatment Unit of King’s College, London, published the results of 384 patients treated in their service. 102 It should be noted that another 135 patients of the same cohort (1995-2000) were not offered treatment at assessment, mainly because of primary diagnosis of major depression (70 persons) and not meeting diagnostic CFS criteria or refusing CBT (42 persons). Average age at entrance was 39 years (SD 11 yrs) and average duration of the fatigue was 5.3 years (SD 4.6 yrs). After an average outpatient treatment duration of 11.3 hours (SD 4.8 hours), on an individual basis, patients improved on the Chalder Fatigue Scale 68 from 8.5 points to 6 points at 6 months follow-up (cut-off for extreme fatigue on this scale: 4 points). On the Work and Social Adjustment Scale, 187 patients improved from 5.5 to 4 points at 6 months follow-up. 7.4.1.7 Discharge from the CFS Service Details of discharge policy were found for one LMDT (St Helier CFS Model of Service, see Appendix 4) and are briefly presented below. BEFORE THE INTERVENTION IS COMPLETE Following completion of the sessions patients will be discussed within the MDT meetings; often these discussions take place between the treating therapist and the patient and not necessarily the whole team and either followed-up by another member of the team where appropriate or discharged back to the care of the GP. A discharge report will be sent to both the referrer and the GP. Patients are usually sent a copy of their discharge report. There are a number of scenarios in which a patient may be discharged before the intervention is complete. These would include: • Unwillingness on the part of the patient to engage in a biopsychosocial model of intervention. • 2 consecutive DNAs (“Did Not Attend”) following an initial assessment or cancellation of 3 appointments within the therapeutic contract. • Little sign of change/progress even after a number of sessions. • Abusive or aggressive behaviour. AFTER THE INTERVENTION CFS is a long term condition and it is recognised that people with CFS may need care and support over a long period of time. In order for the specialist CFS service to have sufficient capacity to deal with new referrals, a formal discharge process will ensure that people are formally assessed for discharge, given a contact number for further support and advice and if necessary referred on to other support agencies. The decision to discharge the patient from the CFS service will be agreed at the MDT or between the patient and the therapist. The discharge criteria for patients with CFS are:
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