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Developing and pretesting a new patient reported outcome measure for paediatric Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME) : cognitive interviews with children
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Parslow, Roxanne M, Shaw, Alison, Haywood, Kirstie L. and Crawley, Esther (2019) Developing and pretesting a new patient reported outcome measure for paediatric Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME) : cognitive interviews with children. Journal of Patient Reported Outcomes, 3 . 67. doi:10.1186/s41687-019-0156-8 ISSN 2509-8020.
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WRAP-developing-patient-paediatric-CFS-NE-children-Haywood-2020.pdf - Published Version - Requires a PDF viewer. Available under License Creative Commons Attribution 4.0. Download (567Kb) | Preview |
Official URL: http://doi.org/10.1186/s41687-019-0156-8
Abstract
Background
There is a lack of patient derived, child specific outcome measures to capture what health outcomes are important to children with Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME). We developed a new Patient Reported Outcome Measure (PROM) for paediatric CFS/ME through qualitative research with children. This study aimed to pre-test the new measure through cognitive interviews with children with CFS/ME.
Methods
Cognitive interviews were undertaken in children’s homes or over Skype. The Three-Step Test-Interview (TSTI) method was used to assess the quality of the draft PROM with children with CFS/ME to identify problems with initial content and design and test modifications over subsequent interview rounds. Children were purposively sampled from a single specialist paediatric CFS/ME service in England.
Results
Twenty-four children and their parents took part. They felt the new measure captured issues relevant to their condition and preferred it to the generic measures they completed in clinical assessment. Changes were made to item content and phrasing, timeframe and response options and tested through three rounds of interviews.
Conclusions
Cognitive interviews identified problems with the draft PROM, enabling us to make changes and then confirm acceptability in children aged 11–18. Further cognitive interviews are required with children 8–10 years old to examine the acceptability and content validity and provide evidence for age related cut offs of the new PROM to meet FDA standards. This study demonstrates the content validity of the new measure as relevant and acceptable for children with CFS/ME. The next stage is to undertake a psychometric evaluation to support the reduction of items, confirm the structure of the PROM and provide evidence of the data quality, reliability and validity.
| Item Type: | Journal Article | |||||||||
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| Subjects: | R Medicine > RB Pathology R Medicine > RJ Pediatrics |
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| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Warwick Research in Nursing |
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| Library of Congress Subject Headings (LCSH): | Chronic fatigue syndrome in children, Pediatrics, Hypoxic-ischemic encephalopathy, Qualitative research | |||||||||
| Journal or Publication Title: | Journal of Patient Reported Outcomes | |||||||||
| Publisher: | Springer | |||||||||
| ISSN: | 2509-8020 | |||||||||
| Official Date: | 9 November 2019 | |||||||||
| Dates: |
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| Volume: | 3 | |||||||||
| Article Number: | 67 | |||||||||
| DOI: | 10.1186/s41687-019-0156-8 | |||||||||
| Status: | Peer Reviewed | |||||||||
| Publication Status: | Published | |||||||||
| Access rights to Published version: | Open Access (Creative Commons) | |||||||||
| Date of first compliant deposit: | 24 January 2020 | |||||||||
| Date of first compliant Open Access: | 4 February 2020 | |||||||||
| Grant number: | N/a | |||||||||
| RIOXX Funder/Project Grant: |
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