Developing and pretesting a new patient reported outcome measure for paediatric Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME): cognitive interviews with children.

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.

Source: Parslow RM, Shaw A, Haywood KL, Crawley E. Developing and pretesting a new patient reported outcome measure for paediatric Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME): cognitive interviews with children. J Patient Rep Outcomes. 2019 Nov 9;3(1):67. doi: 10.1186/s41687-019-0156-8. https://www.ncbi.nlm.nih.gov/pubmed/31707635

A comparison of neuropsychiatric characteristics in chronic fatigue syndrome, multiple sclerosis, and major depression

Abstract:

Chronic fatigue syndrome (CFS), a controversial clinical entity characterized by severe fatigue and constitutional symptoms, has been associated with a variety of psychiatric disorders. To further understand the psychiatric profile of CFS, the authors compared patients with CFS, multiple sclerosis (MS), and major depression by using diagnostic interviews and self-report measures of Axis I disorders and personality disorders. CFS patients differed from patients with major depression, with significantly less depression and fewer personality disorders. Compared with MS patients, CFS patients did not differ with regard to personality disorders. However, they did have significantly more frequent current depression than MS patients, particularly following onset of their illness.

 

Source: Pepper CM, Krupp LB, Friedberg F, Doscher C, Coyle PK. A comparison of neuropsychiatric characteristics in chronic fatigue syndrome, multiple sclerosis, and major depression. J Neuropsychiatry Clin Neurosci. 1993 Spring;5(2):200-5. http://www.ncbi.nlm.nih.gov/pubmed/8508039