Original ArticleHealth-Related Quality of Life Across Pediatric Chronic Conditions
Section snippets
Methods
Secondary data from 589 patients and their caregivers were collected across 8 descriptive studies in the following 8 conditions: obesity, EGID, IBD, epilepsy, type 1 diabetes, SCD, post–renal transplantation, and cystic fibrosis (CF). For longitudinal studies, only the first time point of data collection was included. All participants were recruited during previously scheduled clinic/hospital visits or via telephone after clinic appointments. Informed consent/assent was obtained by research
Results
Youth participants were 47% female, primarily Caucasian (72% Caucasian, 24% African American, 1% Hispanic, 1% Asian, and 3% other), and ranged in age from 2.0 to 18.8 years (11.8 ± 4.3). Caregivers completing parent-proxy report assessments were primarily mothers (85% mothers, 7% fathers, 2% step-parents, 3% grandparents, and 3% other) and currently married (63% married, 17% single, 16% separated/divorced, and 4% other) (Table I).
Discussion
Similar to other research in this area,12, 13, 14 our findings document important differences in HRQOL among 8 chronic conditions. Moreover, results provide important preliminary information regarding patient-reported outcomes of previously understudied disease groups. Although a relatively large body of literature exists examining the HRQOL of youth with obesity,14 diabetes,20 and CF,21 few studies examine the general functioning of youth diagnosed with IBD, EGID, SCD, post–renal
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Funded by NIDDKK23 DK079037, PHS Grant P30 DK 078392, Procter and Gamble Pharmaceuticals Prometheus Laboratories, Inc., to K.A.H.; K23 DK60031, Clinical Research Feasibility Funds, Cincinnati Children's Hospital Medical Center, General Clinical Research Center, US Public Health Service, General Clinical Research Centers Program, National Center for Research Resources/NIHM01 RR08094 to M.Z.; NIHK23 HD057333 to A.C.M.; NIHT32 DK63929 to A.C.M., C.P.W., and K.D.; and NIDDKK23 DK 073340 to K.K.H. The authors declare no conflicts of interest.