Parents' Perceptions of Health-Related Quality of Life of Children Diagnosed with Osteogenesis Imperfecta

Purpose: The purpose of this research was to describe the health-related quality of life (HRQoL) perceptions of parents of children diagnosed with osteogenesis imperfecta (OI). Design and Methods: This research used a descriptive design with a comparative sample. The Child Health Questionnaire (CHQ-PF 28) parent form was used to assess HRQoL in a sample of 37 parents from a mid-western tertiary pediatric hospital OI specialty clinic. Comparisons were made with a sample of parents of well children. Results: Parent HRQoL perception scores were described in both the physical and psycho-social-emotional domains. The domains of physical function (PF), bodily pain (BP), general health (GH), parent impact-emotional (PE), and child self-esteem (SE) were the lowest HRQoL mean domain scores for the parents of the children diagnosed with OI. Ceiling and floor scores were calculated to describe the magnitude of the differences between the mean HRQoL perception domain scores of the two parent groups. Conclusions: Low HRQoL physical and psycho-social-emotional mean domain scores in conjunction with small percentage scores in the ceiling (and greater percentage scores in the floor) for parents of children diagnosed with OI were described. Findings suggest the on-going need for research to identify interventions to promote physical functioning for the child diagnosed with OI. Outcome based programs for parent and family-centered psycho-social self-care should be developed. Comprehensive and longitudinal assessment of HRQoL for both parents and their children diagnosed with OI will assist in documenting the outcomes of interventions for the management of chronic care. (C) 2020 Elsevier Inc. All rights reserved.