Association of biomarkers with health-related quality of life and history of stressors in myalgic encephalomyelitis/chronic fatigue syndrome patients

This study examined associations between comorbidity and health-related quality of life (HRQL) in people with multiple sclerosis (MS). Data were derived from the Canadian Community Health Survey (CCHS) Cycle 1.1, a cross-sectional survey conducted by Statistics Canada. A nationally representative sample of community-dwelling Canadians was interviewed to determine whether they had been diagnosed with various chronic conditions. Participants were also administered the Health Utilities Index Mark 3 (HUI3) questionnaire to evaluate HRQL. Of the 131,535 participants, 335 reported having MS. Comorbidities listed by at least 10% of respondents with MS were assessed for their relation to HRQL, with age, sex, education, marital status, income, and number of comorbidities included as covariates. Respondents averaged 1.6 comorbidities. Eight comorbidities were experienced by at least 10% of respondents: back problems (35%), nonfood allergies (29%), urinary incontinence (28%), arthritis (26%), hypertension (17%), chronic fatigue syndrome (16%), depression (16%), and migraine (14%). Differences in HRQL between people with and without urinary incontinence, arthritis, hypertension, chronic fatigue syndrome, and depression were either clinically important or statistically significant at the .05 level in bivariate analyses. Only urinary incontinence and depression, however, were negatively associated with HRQL in a multivariate analysis, which explained 26% of the variance. Lower levels of education and receiving social assistance were also negatively associated with HRQL, with social assistance contributing more to the variance in HRQL than either comorbidity.

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Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking

Quality of Life Research ◽

10.1007/s11136-019-02399-z ◽

2020 ◽

Vol 29 (5) ◽

pp. 1169-1181

Author(s):

Roxanne M. Parslow ◽

Nina Anderson ◽

Danielle Byrne ◽

Kirstie L. Haywood ◽

Alison Shaw ◽

...

Keyword(s):

Quality Of Life ◽

Conceptual Framework ◽

Outcome Measure ◽

Chronic Fatigue ◽

Health Related Quality ◽

Fatigue Syndrome ◽

Related Quality ◽

Health Related ◽

Ranking Exercise

Abstract Purpose Chronic fatigue syndrome (CFS)/myalgic encephalopathy (ME) is relatively common in children and is disabling at an important time in their development. This study aimed to develop a conceptual framework of paediatric CFS/ME using the patient-perspective to ensure that the content of a new outcome measure includes the outcomes most important to young people. Methods We developed a child-centred interactive card ranking exercise that included health-related quality of life (HRQoL) outcomes identified from a previous review of the literature as well as qualitative work. Adolescents and their parents selected and ranked the outcomes most important to them and discussed each outcome in further detail. Adolescents were purposively sampled from a single specialist paediatric CFS/ME service in England. Interviews were audio recorded and transcribed verbatim, and thematic framework analysis was used to develop the final conceptual framework. Results We interviewed 43 participants in which there are 21 adolescents, 12–17 years of age with mild–moderate CFS/ME and their parents (20 mothers and 2 fathers). ‘Symptoms’, ‘tiredness’, ‘payback and crashing’ and ‘activities and hobbies’ were ranked most important to improve by both children and parents. Children ranked ‘school’ higher than parents and parents ranked ‘mood’ higher than children. A youth- specific CFS/ME conceptual framework of HRQoL was produced that included 4 outcome domains and 11 subdomains: sleep, tiredness, problems concentrating, individual symptoms, fluctuation and payback, daily and general activities, participation in school, leisure and social life, mood, anxiety and self-esteem. Conclusions An interactive card ranking exercise worked well for adolescents aged 12–17 to elicit the most important outcomes to them and explore each domain in further detail. We developed a final conceptual framework of HRQoL that forms the basis of a new paediatric patient-reported outcome measure (PROM) in CFS/ME.

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