Abstract
Children with medical complexity (CMC) have complex chronic conditions, functional limitations, and high resource utilization. When compared to other parents, parents of children with disabilities report low levels of health-related quality of life (HRQOL). We describe the HRQOL of parents of CMC. One hundred seventy parents of CMC (mean age =3.4 years; 57% male) in a Comprehensive Care Program at a tertiary care center completed the PedsQL Family Impact Module (PedsQL FIM™). Scores were low across all sections, with a total average of 52 (SD + 17.7). Parental HRQOL was not associated with the child’s medically complexity, level of parental education, parental medical training, number of children, number of CMC in the home, or advance directive status. Parents of CMC report low HRQOL. Strategies to better support parents of CMC are needed.
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