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

  • Kilby MannEmail author
  • Justin C. Alvey
  • Colleen Marty
  • Nancy A. Murphy
Pediatric Rehabilitation Medicine (A Houtrow and M Fuentes, Section Editors)
  • 24 Downloads
Part of the following topical collections:
  1. Topical Collection on Pediatric Rehabilitation Medicine

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.

Keywords

Children with medical complexity (CMC) Parental QOL Health-related QOL Family Impact score PedsQL Family Impact Module (FIM) 

Notes

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.

Compliance with Ethical Standards

Conflict of Interest

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

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Kilby Mann
    • 1
    Email author
  • Justin C. Alvey
    • 1
  • Colleen Marty
    • 1
  • Nancy A. Murphy
    • 1
  1. 1.Department of PediatricsUniversity of Utah School of MedicineSalt Lake CityUSA

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