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Background  Caring for a child with a chronic condition, such as sickle cell disease, can have a significant impact on parents and families. In order to provide comprehensive care and support to these families, psychometrically sound instruments are needed as an initial step in measuring the impact of chronic diseases on parents and families. We sought to evaluate the psychometric properties of the PedsQL™ Family Impact Module in populations of children with and without sickle cell disease. In addition, we sought to determine the correlation between parent's well being and their proxy report of their child's health-related quality of life (HRQL).    Methods  We conducted a cross-sectional study of parents of children with and without sickle cell disease who presented to an urban hospital-based sickle cell disease clinic and an urban primary care clinic. We assessed the HRQL and family functioning of both groups of parents utilizing the PedsQL™ Family Impact Module. The reliability, validity and factor structure of the instrument were determined and scores from the instrument were correlated with scores from parent-proxy report of their child's HRQL using the PedsQL™ 4.0 Generic Core Scales.    Results  Parents of 170 children completed the module (97 parents of children with sickle cell disease and 73 parents of children without sickle cell disease). The Family Impact Module had high ceiling effects but was reliable (Cronbach's alpha > 0.80 in all scales). The empirical factor structure was generally consistent with the theoretical factor structure and supported construct validity. The Family Impact Module discriminated between parents of children with severe sickle cell disease from parents of children with mild disease or no disease in the areas of communication and worry. There were no significant differences across any of the subscales between parents of children with mild sickle cell disease and those with no disease. Parents with higher scores, representing better HRQL and family functioning, generally reported higher HRQL scores for their children.    Conclusion  The PedsQL™ Family Impact module was reliable, however it displayed large ceiling effects and did not discriminate well between parents of children with and without sickle cell disease. Future research to evaluate the psychometric properties of the Family Impact Module for parents of healthy children may be helpful.

A psychometric evaluation of the PedsQL™ Family Impact Module in parents of children with sickle cell disease