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ToolsSommerfelt, Kristian, Schei, Trude, Seton, Katharine A. and Carding, Simon R. (2024) Assessing functional capacity in myalgic encephalopathy/chronic fatigue syndrome: A patient-informed questionnaire. Journal of Clinical Medicine, 13 (12). ISSN 2077-0383
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Abstract
Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an acquired disease with significant morbidity that affects both children and adults. Post-exertional malaise is a cardinal symptom of ME/CFS and impacts a patient’s functional capacity (FC). The absence of effective tools to assess FC has significant consequences for timely diagnosis, clinical follow-up, assessments for patient disability benefits, and research studies. In interventional studies, the inability to assess FC can result in an incomplete assessment of the potential benefit of the intervention, leading to beneficial treatment outcomes being missed. Methods: Using extensive, repeated patient feedback, we have developed a new questionnaire, FUNCAP, to accurately assess FC in ME/CFS patients. The questionnaire consists of eight domains divided by activity types: A. personal hygiene/basic functions, B. walking/movement, C. being upright, D. activities in the home, E. communication, F. activities outside the home, G. reactions to light and sound, and H. concentration. Results: Through five rounds of anonymous web-based surveys and a further test–retest validation round, two versions of the questionnaire were developed: a longer version comprising 55 questions (FUNCAP55), developed for improved diagnostic and disability benefit/insurance FC assessments; and a shorter version (FUNCAP27) for clinical patient follow-up and potential use in research. Good reliability and validity and negligible floor and ceiling effects were found, with comparable findings in all aspects in both a large Norwegian (n = 1263) and a separate English-language international sample (n = 1387) demonstrating the validity and reliability of FUNCAP. Conclusions: Our findings support the utility of FUNCAP as an effective, reliable and valid tool for assessing FC in ME/CFS patients.
| Item Type: | Article |
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| Additional Information: | Data Availability Statement: Selected data presented in this study are available on reasonable request from the corresponding author. The authors have a website, www.funcap.no, under development that will contain relevant issues related to the clinical and research use of the FUNCAP questionnaire. It will provide continuously updated information. Funding information: This research received no external funding. K.A.S and S.R.C’s ME/CFS research is supported by the UK charity Invest in ME Research. |
| Uncontrolled Keywords: | chronic fatigue syndrome,functional capacity,cfs,post-exertional malaise,questionnaire,survey,medicine(all) ,/dk/atira/pure/subjectarea/asjc/2700 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > Norwich Medical School |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging Faculty of Medicine and Health Sciences > Research Groups > Gastroenterology and Gut Biology |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 22 Oct 2024 11:30 |
| Last Modified: | 30 Oct 2024 00:51 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/97104 |
| DOI: | 10.3390/jcm13123486 |
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