Distinction of quality of life, health related quality of life, and healthstatus in children referred for rheumatologic care

Objective. Current health status measures [sometimes called quality of life (QOL) measures] are based on the values of their designers. QOL, though, r eflects the idiosyncratic values of each individual. We investigated whethe r children referred for rheumatologic care differentiate between the concep ts of health related quality of lift: (HRQOL), overall QOL, and health stat us. Methods. One hundred twenty-two consecutive children seen at a pediatric rh eumatology referral clinic completed a new global self-report quality of li fe scale (Quality of My Life), a functional impairment scale (Childhood Hea lth 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 o f 10, respectively) in this sample of patients. Our subjects did differenti ate between overall QOL and HRQOL and health status. Health status, as meas ured by disease severity, accounted for only a moderate amount of variabili ty in HRQOL (R-2 = 0.25, p less than or equal to 0.0001). Health status mea sured by functional disability accounted for even less of the variability i n HRQOL (R-2 = 0.047, p = 0.013), Similarly, HRQOL accounted for only a mod erate amount of the variability seen in overall QOL (R-2 = 0.31, P less tha n or equal to 0.0001). Conclusion. The goal of most health professionals is to improve their patie nts' overall QOL. QOL, though, appears to be a broad and idiosyncratic cons truct affected only moderately by health. Health status, global HRQOL, and overall QOL all provide independent information. All 3 measures should be c onsidered for use in research studies. HRQOL and overall QOL reflect patien ts' own values, and therefore may offer important information for clinician s in addition to health status.