Обмеження активності у пацієнтів із синдромом хронічної втоми – складання специфічних анкет хвороби

A literature review was performed to ascertain the lack of a disease specific measure for assessing activity limitations and participation restriction in Chronic Fatigue Syndrome (see methods). Appendix III presents an overview of the different questionnaires for assessing functional disability in Chronic Fatigue Syndrome patients. The Medical Outcomes Short Form 36 Health Status Survey, the Sickness Impact Profile and the Karnofsky Performance Status questionnaire appear to be the most widely used measures for assessing outcome in CFS. No disease specific measures were found. The results of this review clearly indicate the lack of a reliable, valid and disease specific measure for assessing activities and participation in Chronic Fatigue Syndrome patients.

In this study, a retrospective analysis of Karnofsky Performance Status questionnaires and Activities of Daily Living questionnaires of 141 CFS-patients was performed to monitor activity limitations and participation restriction in CFS. These data were used to create a new questionnaire for assessing activity limitations and participation restrictions in Chronic Fatigue Syndrome.

 

 

Literature Review

A literature review was performed, aiming

To ascertain that there are no disease-specific measures for assessing activities and participation in Chronic Fatigue Syndrome patients.

To know which (generic) measures were used to assess activities and participation by Chronic Fatigue Syndrome patients.

On the 30th of July 2001, we screened the PubMed-database (http: //www. ncbi. nlm. nih. gov/PubMed/) using these keywords: «quality of life chronic fatigue syndrome»/»disability chronic fatigue syndrome»/»functional status chronic fatigue syndrome»/»functional disability chronic fatigue syndrome»/ «ADL (activities of daily living) chronic fatigue syndrome»/»IADL (instrumental activities of daily living) chronic fatigue syndrome»/»activities of daily living chronic fatigue syndrome. « To be allocated for further analysis, the article-abstract had to reveal the usage of a measure for assessing functional status in patients with Chronic Fatigue Syndrome. Because we are focussing on patients fulfilling the 1994 CDC case definition for Chronic Fatigue Syndrome (1), all studies selecting their patients according to the Australian (8) or British (9) definitions were excluded from the review. Papers were collected in the Medical Library of the Life Science Campus Jette, Vrije Universiteit Brussel, Belgium; and the Biomedical Library Gasthuisberg, Katholieke Universiteit Leuven, Belgium.

Patients

The study was conducted in Brussels, at a university-based outpatient clinic (Vrije Universiteit Brussel). Data, collected during two different clinical trials, were analysed retrospectively. Baseline-data of two different questionnaires (the Karnofsky Performance Status Questionnaire and a Dutch modification of the Barthel ADL index: the activities of daily living questionnaire), were used for analysis. These questionnaires were used for evaluating outcome in these trials. The selection and characterisation of the subjects involved several steps. All subjects underwent an extensive medical evaluation, consisting of a standard physical examination and medical history, an exercise capacity test, a symptom checklist and routine laboratory tests. The laboratory tests included a complete blood cell count, determination of the erythrocyte sedimentation rate, a serum electrolyte panel, measures of renal, hepatic and thyroid function, as well as rheumatological and viral screenings. When judged necessary, a structured psychiatric interview was performed. In a number of cases further neurological, gynaecological, endocrine, cardiac and/or gastrointestinal evaluation was performed. When positive results were found in any of the evaluations that met the Fukuda et al. (1) exclusionary criteria, the patients were not included in this study. The medical records were reviewed to determine if patients suffered from organic or psychiatric illnesses that could explain their symptoms. The subjects were examined by one physician (KDM), who interviewed the patients with respect to their signs and symptoms. In addition, patients had to be a native speaker of Dutch to be included for data analysis. Subjects were excluded if they were < 16 or > 65 years of age. All patients were Caucasian. Demographic features of the sample are presented in Table 1.

Questionnaires

In 129 out of 141 patients, the KPS as well as the ADL-questionnaire were available. Only baseline data were used for analysis, implicating subjects did not receive treatment at the time they filled in the questionnaires. Thirty-three patients filled in the questionnaires only once, while 108 completed each measure three times with an intervening period of one week. All three baseline-data were reduced to a mean score for each item (question).

The Karnofsky Performance Status (KPS) questionnaire is a generic health status measure, consisting of six questions. A Dutch translation of the KPS questionnaire was used. Question number one was not used for analysis, because it assesses symptoms, and the aim of this study was to collect data concerning activity limitations and participation restriction in Chronic Fatigue Syndrome patients. Total KPS-scores range from 0 to 100, 100 indicating «normal activity; no complaints; no evidence of disease, « while