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1) to «very important» (= 4) for the importance verification. Item scores are calculated by multiplying the score on the satisfaction-part of each question with the score on the importance verification (each ranging from 1 to 4).
TABLE 5
Definite Item Selection for the CFS-APQ.
NumberActivity limitations and participation restriction
1Cleaning
2Washing dishes and returning them to cupboard
3Iron
4Do the wash
5Gardening
6Replace light bulb
7Walking
8Climb one flight of stairs
9Stand one hour
10Sit two hours
11Doing groceries
12Thirty minutes of computer work
13Carrying heavy objects
14Write full page letter
15Use screwdriver
16Hammer a nail
17Make one bed
18Reading
19Social activities
20School/work
21Sports
22Studying
23Driving a car
24Preparing meals
25Caring for a child
The rationale behind this approach is based on the assumption that a patient, highly disabled in activities which are part of important areas of his/her life, have lower quality of life than those who are only disabled in unimportant activities (10). In addition, the possibility for the patient to mark a certain item not to be applicable for her/his specific living environment was added. Overall scores are calculated by counting all item scores and by dividing this sum by the amount of properly answered questions (implicating an overall score ranging from 1 to 16). If a patient indicates the item not to be applicable, or when the question is not filled in properly, that question should not be included in the overall score calculation. Usage of a numeric score implicates the ceiling effect (71), because a total score of 16 theoretically does not represent complete incapability of performing activities and participating. The questionnaire had to be time-specific. Therefore, each page contains the same message on top: «The answers should apply to last weeks «situation. «
DISCUSSION
These data clearly show marked activity limitation and participation restriction in Chronic Fatigue Syndrome. CFS appears to affect a large group of activities, including household activities, carrying, moving and manipulating objects, caring for possessions and assisting others, walking, maintaining a body position, acquiring daily necessities, producing written messages, understanding messages, moving around using transportation and learning. In addition, participation in social relationships, community, social and civic life, education, work and employment is hindered as well. Assessing these aspects of quality of life may be of great value to patients and caregivers (physical therapists, medical doctors, and psychologists, among others). Indeed, the patients' primary expectance of treatment may not to be to reduce symptoms, but to regain full participation. The international classification of functioning, disability and health provides an excellent frame to measure outcomes and quality of life in research settings, and in needs assessment, matching treatments with specific conditions, vocational assessment, rehabilitation and outcome evaluation in clinical settings.
The construction of a disease-specific questionnaire for measuring activity limitations and participation restriction in patients with Chronic Fatigue Syndrome, based on retrospective analysis of more than 600 questionnaires and a literature review, was outlined. Literature review revealed the lack of a valid and disease-specific questionnaire for assessing functionality in CFS. Instead, CFS-researchers nowadays utilise generic measures, most frequently the Sickness Impact Profile and the Medical Outcomes Short Form 36 Health Survey. A disease-specific measure for assessing activity limitations and participation restriction may be of great value for monitoring outcome in clinical trials (responsiveness). However, unknown reliability and validity inhibits the use of this new questionnaire in clinical practice or research settings. Actually, each measure needs to show sufficient reliability, disease specificity, content-validity, convergence-validity, congruence-validity and criteria-validity. In addition, responsiveness is of cardinal importance for evaluating outcome in clinical trials. Comparison of outcome on the CFS-APQ in multiple sclerosis, major depression or fibromyalgia would be appropriate to assess disease specificity (38). The use of a «daily activity diary» (58), or questioning patients about activities and participation (59) could reveal any failure in content-validity. The way we have constructed the CFS-APQ, based on self-reported activity limitations and participation restriction of 141 CFS-patients, substantiate content-validity. On the other hand, comprehensiveness of item selection still has to be established. To examine convergence-validity (one aspect of construct validity), we need to search for correlations between visual analogue scores for pain (or fatigue) and overall CFS-APQ scores (60). Comparison with the Sickness Impact Profile, Short Form-36, or other validated (generic) measures for assessing functionality may be used to determine congruence-validity (60). Observation of patients performing certain tasks (mentioned in the questionnaire) can be used to assess criteria-validity (61). Face-validity appears not to be an essential part of validity (62). Reliability, disease specificity, convergence-validity and content-validity of this new measure are currently being examined.
In conclusion, no reliable and validated disease-specific questionnaires for assessing activity limitations and participation restriction are currently available. Retrospective analysis of Karnofsky Performance Status questionnaires and Activities of Daily Livings scales of 141 subjects suggested marked activity limitations and participation restriction in patients with Chronic Fatigue Syndrome. These data were used to create a new, Dutch questionnaire, the Chronic Fatigue Syndrome Activities and Participation Questionnaire (CFS-APQ). Reliability and different aspects of validity still have to be established.
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