PTCohortThe South African journal of physiotherapy2019

Validity and feasibility of the self-report EQ-5D-Y as a generic Health-Related Quality of Life outcome measure in children and adolescents with Juvenile Idiopathic Arthritis in Western Cape, South Africa.

Desiree Scott, Christiaan Scott, Jennifer Jelsma and 2 others

PMID 31392295

WHAT IT FOUND

In 64 children with JIA, the short EQ-5D-Y self-report took just over 1 minute, had no missing answers, and often matched disease-specific measures, especially pain and mobility.

It may be a quick screen, but did not fully match all measures.

Key findings

01The EQ-5D-Y separated mild from moderate JIA severity: VAS p = 0.047 (Cohen's d = 0.72) and latent value p = 0.006 (d = 1.46).

02EQ-5D-Y levels matched most comparable JAMAR dimensions significantly, except anxiety (p = 0.072), but matched PedsQL only for pain (p = 0.001).

03The EQ-5D-Y took 1.3 minutes on average, PedsQL 2.7 minutes, and JAMAR 8.9 minutes, with no missing responses.

STILL TO COME

How it was doneWhat they foundWhat it means for PTs

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What it does not show

The study had a small sample: 64 participants after two withdrawals, and the authors state this may have reduced the power to detect relationships. Most participants had mild disease: 54 were mild and 10 were moderate, and a single severe participant was excluded from analysis, so the findings may not apply to children with severe JIA. The paper reports 64 participants, 54 mild and 10 moderate, but also says a single severe participant was excluded from analysis; the number actually analysed is unclear. Only English-speaking children aged 8 to 15 years who had passed at least 2 years of formal schooling were included, so younger children, non-English speakers, and children with poor cognitive function or communication difficulties were not tested. Seven participants were recruited through an information-sharing session that included exercise, dancing, yoga, and peer discussion; the authors state this positive experience may have inflated short-term quality-of-life reporting. The study compared mild and moderate groups during one data-collection period; it did not test whether changes in EQ-5D-Y scores track real clinical change over time. Completion time was not recorded for 8 questionnaires. The absence of missing responses may not reflect routine clinic use because the authors reminded participants to complete all questions.

The easy way to misread this

Do not conclude that the EQ-5D-Y is a complete replacement for disease-specific outcome measures in JIA. It was quick and mostly aligned with JAMAR dimensions, but it did not correspond well with PedsQL except pain and did not show a significant difference for anxiety, so longer assessment may still be needed when symptoms worsen.

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The study

Participants
64 participants (66 recruited, 2 withdrawn; a single severe participant was excluded from analysis; tables report n = 64)
Certainty of evidence
Low

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Cite

Desiree Scott, Christiaan Scott, Jennifer Jelsma, et al. Validity and feasibility of the self-report EQ-5D-Y as a generic Health-Related Quality of Life outcome measure in children and adolescents with Juvenile Idiopathic Arthritis in Western Cape, South Africa. The South African journal of physiotherapy. 2019.

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