Measuring activity limitations and participation restrictions in patients with chronic fatigue syndrome   August 31st, 2016

​Chronic fatigue syndrome (CFS) is a complex syndrome with severe and debilitating fatigue. The experienced fatigue is not sufficiently reduced by resting, causing patients to perform less occupational, educational, social or personal activities and consequently restricting their participation. Secondly, after performing too much physical or mental activities, patients often experience an exacerbation of their symptoms (Fukuda et al. 1994). To avoid this, they develop an activity-related strategy of complete rest. Instead of achieving improvement, this strategy leads to even more impairments, activity limitations and participation restrictions. In order to prevent further deterioration, re-activation and reduction of social isolation are two of the most important aims of rehabilitation (Working Group Convened under the Auspices of the Royal Australasian College of Physicians, 2002).

To support patients in performing significant and purposeful daily activities maintaining their participation and autonomy, identification of their activity limitations and participation restrictions is necessary (American Occupational Therapy Association, 2010; Kinebanian and Le Granse, 2006; Occupational Therapy Australia, 2010 & Association of Canadian Occupational Therapy Regulatory Organizations, 2011).

When reviewing scientific literature, it becomes clear that many assessment tools measuring activity limitations and participation restrictions are available and currently different instruments are being used in patients with CFS (Vergauwen et al. 2015). Because CFS patients are a disabled and generally inactive group, it is important that their limitations and restrictions are correctly identified. However, not every measurement instrument is able to do so, hindering their usability within this population. The quantity of measurement instruments makes it difficult to choose the most appropriate one, because there are many aspects to consider, such as the target group and psychometric properties within the desired population (Kinebanian and Le Granse, 2006; Terwee et al. 2007 & The TUNING Occupational Therapy Project Group, 2008).

From this point of view, a systematic review was conducted identifying measurement instruments capable of measuring the specific activity limitations and participation restrictions experienced by CFS patients and their psychometric properties in this population.

Thirty-eight unique measurement instruments to evaluate activity limitations and participation restrictions of CFS patients used in scientific research were identified. However, only the psychometric properties of the Chronic Fatigue Syndrome-Activity and Participation Questionnaire (CFS-APQ), Medical Outcomes Study Short-Form 36 (SF-36), Euroqol 5 (EQ-5D), The World Health Organization Quality Of Life Assessment Instrument (WHOQOL-100) and Work and Social Adjustment Scale (WSAS) were evaluated in this patient population.  All available information was extracted and rated based on the COSMIN checklist, a checklist developed for evaluating health related measurement instruments (COSMIN 2016; Vergauwen et al. 2015)

The results of this systematic review show that there are enough measurement instruments to measure activity limitations and participation restrictions, but there is limited information available about their psychometric properties. Consequently, the results of these measurement instruments cannot be judged objectively due to their unconfirmed reliability and/or validity. As a result, no instrument could be deemed suitable to use in patients with CFS, both in scientific research and in clinical practice.

This leads us to conclude that the development of new measurement instruments is currently unnecessary, but further research is needed to evaluate the psychometric properties of existing instruments (Vergauwen et al. 2015).

Kuni Vergauwen

2016  Pain in Motion

References and further reading:

Vergauwen K, Huijnen IP, Kos D, Van de Velde D, van Eupen I, Meeus M. Assessment of activity limitations and participation restrictions with persons with chronic fatigue syndrome: a systematic review. Disabil Rehabil. 2015: 37(19):1706-16.

Fukuda K, Straus SE, Hickie I, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med 1994;121: 953–9.

Working Group Convened under the Auspices of the Royal Australasian College of Physicians. 2002. Chronic fatigue syndrome. Clinical practice guidelines. Med J Aust 2002;176(9):17-55. [last accessed 31 Jul 2016].

American Occupational Therapy Association. AOTA standards for continuing competence. Am J Occup Ther (Suppl) 2010;64:S103–5.

Kinebanian A, Le Granse M. Grondslagen van de ergotherapie. 2nd ed. Maarssen: Elsevier; 2006.

Occupational Therapy Australia. 2010. Australian Minimum Competency Standards for New Graduate Occupational Therapists (ACSOT). [last accessed 25 Jul 2016].

Association of Canadian Occupational Therapy Regulatory Organizations (ACOTRO). 2011. Essential Competencies of Practice for Occupational Therapists in Canada, 3rd ed. [last accessed 25 Jul 2016]

Terwee CB, Bot SDM, de Boer MR, et al. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol 2007;60:34–42.

The TUNING Occupational Therapy Project Group. 2008. Reference points for the design and delivery of degree programmes in occupational therapy. [last accessed 25 Jul 2016].

Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN). [last accessed 25 Jul 2016].