Original Article
Health-Related Quality of Life Across Pediatric Chronic Conditions

https://doi.org/10.1016/j.jpeds.2009.11.008Get rights and content

Objective

To compare health-related quality of life (HRQOL) across 8 pediatric chronic conditions, including 5 understudied populations, and examine convergence between youth self-report and parent-proxy report.

Study design

Secondary data from 589 patients and their caregivers were collected across the following conditions: obesity, eosinophilic gastrointestinal disorder, inflammatory bowel disease, epilepsy, type 1 diabetes, sickle cell disease, post–renal transplantation, and cystic fibrosis. Youth and caregivers completed age-appropriate self-report and/or parent-proxy report generic HRQOL measures.

Results

Youth diagnosed with eosinophilic gastrointestinal disorder and obesity had lower HRQOL than other pediatric conditions by parent report. Caregivers reported lower HRQOL by proxy report than youth self-reported across most subscales.

Conclusions

Use of brief, easily administered, and reliable assessments of psychosocial functioning, such as HRQOL, may provide clinicians additional opportunities for intervention or services targeting improved HRQOL relative to the needs of each population.

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.

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