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Health-Related Quality of Life and Family Functioning of Parents of Children with Medical Complexity

  • Pediatric Rehabilitation Medicine (A Houtrow and M Fuentes, Section Editors)
  • Published:
Current Physical Medicine and Rehabilitation Reports Aims and scope Submit manuscript

Abstract

Purpose of Review

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.

Recent Findings

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.

Summary

Parents of CMC report low HRQOL. Strategies to better support parents of CMC are needed.

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Acknowledgments

Tyler Bardsley MS is acknowledged for his contribution to the study design.

Funding

This study was supported by a grant from the Primary Children’s Hospital Foundation.

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Authors and Affiliations

  1. Department of Pediatrics, University of Utah School of Medicine, 81 N Mario Capecchi Dr., Salt Lake City, UT, 84113, USA

    Kilby Mann, Justin C. Alvey, Colleen Marty & Nancy A. Murphy

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  1. Kilby Mann
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  2. Justin C. Alvey
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  4. Nancy A. Murphy
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Correspondence to Kilby Mann.

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Kilby Mann, Justin Alvey, Colleen Marty, and Nancy Murphy declare no conflicts of interest relevant to this manuscript.

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This article is part of the Topical Collection on Pediatric Rehabilitation Medicine

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Mann, K., Alvey, J.C., Marty, C. et al. Health-Related Quality of Life and Family Functioning of Parents of Children with Medical Complexity. Curr Phys Med Rehabil Rep 7, 23–29 (2019). https://doi.org/10.1007/s40141-019-0208-2

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