RESUMO
BACKGROUND: The PedsQL Measurement Model was designed to measure health-related quality of life (HRQOL) in children and adolescents. The PedsQL 4.0 Generic Core Scales were developed to be integrated with the PedsQL Disease-Specific Modules. The newly developed PedsQL Family Impact Module was designed to measure the impact of pediatric chronic health conditions on parents and the family. The PedsQL Family Impact Module measures parent self-reported physical, emotional, social, and cognitive functioning, communication, and worry. The Module also measures parent-reported family daily activities and family relationships. METHODS: The 36-item PedsQL Family Impact Module was administered to 23 families of medically fragile children with complex chronic health conditions who either resided in a long-term care convalescent hospital or resided at home with their families. RESULTS: Internal consistency reliability was demonstrated for the PedsQL Family Impact Module Total Scale Score (alpha = 0.97), Parent HRQOL Summary Score (alpha = 0.96), Family Functioning Summary Score (alpha = 0.90), and Module Scales (average alpha = 0.90, range = 0.82 - 0.97). The PedsQL Family Impact Module distinguished between families with children in a long-term care facility and families whose children resided at home. CONCLUSIONS: The results demonstrate the preliminary reliability and validity of the PedsQL Family Impact Module in families with children with complex chronic health conditions. The PedsQL Family Impact Module will be further field tested to determine the measurement properties of this new instrument with other pediatric chronic health conditions.
