Distinction of quality of life, health related quality of life, and health status in children referred for rheumatologic care.
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OBJECTIVE: Current health status measures [sometimes called quality of life (QOL) measures] are based on the values of their designers. QOL, though, reflects the idiosyncratic values of each individual. We investigated whether children referred for rheumatologic care differentiate between the concepts of health related quality of life (HRQOL), overall QOL, and health status. METHODS: One hundred twenty-two consecutive children seen at a pediatric rheumatology referral clinic completed a new global self-report quality of life scale (Quality of My Life), a functional impairment scale (Childhood Health Assessment Questionnaire), and a disease severity visual analog scale. Sixty children were seen for a followup assessment. RESULTS: HRQOL was somewhat lower than overall QOL (median 6.6 vs 8.6 out of 10; respectively) in this sample of patients. Our subjects did differentiate between overall QOL and HRQOL and health status. Health status, as measured by disease severity, accounted for only a moderate amount of variability in HRQOL (R2 = 0.25, p< or =0.0001). Health status measured by functional disability accounted for even less of the variability in HRQOL (R2 = 0.047, p = 0.013). Similarly, HRQOL accounted for only a moderate amount of the variability seen in overall QOL (R2 = 0.31, p< or =0.0001). CONCLUSION: The goal of most health professionals is to improve their patients' overall QOL. QOL, though, appears to be a broad and idiosyncratic construct affected only moderately by health. Health status, global HRQOL, and overall QOL all provide independent information. All 3 measures should be considered for use in research studies. HRQOL and overall QOL reflect patients' own values, and therefore may offer important information for clinicians in addition to health status.
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