Purpose: To describe the initial results of the Child Health Ratings Inventory (CHRIs), 20-item generic health-related quality of life (HRQL) instrument and the 10-item disease-specific (DS) module, the Disease Specific Impairment Inventory-Hematopoietic Stem Cell Transplantation (DSII-HSCT), for children and adolescents, ages 5-18 years and their parents following HSCT.
Study design: Using cross sectional design, 122 children with a median age of 11 years (range 5.0-18 years) completed the questionnaire (CHRIs + DSII-HSCT) with research assistance. Seventy-four parents independently completed a parallel version of the questionnaire; health care providers assigned a global clinical severity rating.
Results: The generic core includes four domains: physical, role, and emotional functioning, and energy. The DS module has three domains: worry, hassles, and body image. The Cronbach's alpha for parents and for older children (8 years and over) exceeded 0.70 for all generic and DS domains. While the range of alpha coefficients was lower for younger children, ages 5-7 year, only the alpha coefficient for one domain (energy) was less than 0.70. The instrument satisfactorily discriminated between clinically important groups: those early in the transplant process (< 6 months) versus those later (> 12 months) and by provider-assigned clinical severity ratings.
Conclusion: results suggest that the CHRIs generic core and its DSII-HSCT module is a promising measure of HRQL after pediatric HSCT. Although parent and child reports were moderately correlated and revealed complementary results, the unique perspectives of both raters provide a more complete picture of HRQL. Longitudinal application is underway to further characterize the measurement properties of the CHRIs and to determine the instrument's responsiveness and sensitivity to change over time in this vulnerable population.