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Developing and pretesting a new patient reported outcome measure for paediatric Chronic Fatigue Syndrome/ Myalgic
Roxanne M Parslow1, Alison Shaw2, Kirstie L Haywood3
1Centre for Academic Child Health (CACH), Bristol Medical School, University of Bristol, 1-5 Whiteladies Road, Bristol, BS8 1NU, UK. roxanne.parslow@bristol.ac.uk.
Insights
Researchers developed a new patient-reported outcome measure (PROM) for pediatric Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME). Cognitive interviews confirmed the PROM
Area of Science:
- Pediatric health outcomes research
- Patient-reported outcome measures (PROMs) development
- Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME) in children
Background:
- Lack of child-specific outcome measures for pediatric CFS/ME.
- Development of a novel PROM for pediatric CFS/ME using qualitative methods.
- Need to pre-test the draft PROM with the target pediatric population.
Purpose of the Study:
- To pre-test a newly developed PROM for pediatric CFS/ME.
- To assess the quality, content, and design of the draft PROM through cognitive interviews.
- To identify and implement necessary modifications to the PROM.
Main Methods:
- Cognitive interviews utilizing the Three-Step Test-Interview (TSTI) method.
- Interviews conducted in children's homes or via Skype.
- Purposive sampling of children with CFS/ME from a specialist pediatric service in England.
Main Results:
- Twenty-four children and parents participated in the cognitive interviews.
- Participants found the new PROM relevant and preferred it over generic measures.
- Iterative revisions were made to item content, phrasing, timeframe, and response options over three interview rounds.
Conclusions:
- Cognitive interviews successfully identified issues and confirmed the acceptability of the draft PROM for children aged 11-18.
- Further research is needed with younger children (8-10 years) to establish age-specific validity and cut-offs.
- The study demonstrates the content validity of the PROM, with psychometric evaluation planned as the next step.
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.
