Health-Related Quality of Life Across Pediatric Chronic Conditions

Received 22 June 2009; received in revised form 30 September 2009; accepted 4 November 2009. published online 01 February 2010.

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.

ANCOVA, Analysis of covariance, CF, Cystic fibrosis, EGID, Eosinophilic gastrointestinal disorder, FDA, Food and Drug Administration, HRQOL, Health-related quality of life, IBD, Inflammatory bowel disease, MANCOVA, Multivariate analysis of covariance, PedsQL, Pediatric Quality of Life Inventory, SCD, Sickle cell disease

a Center for the Promotion of Treatment Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, Cincinnati, OH

b Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH

c Division of Allergy and Immunology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH

d Division of Gastroenterology, Hepatology, and Nutrition, Cincinnati Children's Hospital Medical Center, Cincinnati, OH

e Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH

f Department of Medical Humanities and Social Sciences, Florida State University College of Medicine, Tallahassee, FL

Reprint requests: Dr Kevin A. Hommel, Center for the Promotion of Treatment Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, MLC 7039, Cincinnati, OH 45229-3039.

Funded by NIDDK K23 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/NIH M01 RR08094 to M.Z.; NIH K23 HD057333 to A.C.M.; NIH T32 DK63929 to A.C.M., C.P.W., and K.D.; and NIDDK K23 DK 073340 to K.K.H. The authors declare no conflicts of interest.

PII: S0022-3476(09)01115-9

doi:10.1016/j.jpeds.2009.11.008

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