Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity

Abstract

Introduction: Children with chronic illnesses and medical complexity (CIMC) require frequent health-care use, thereby increasing medical care costs. We evaluated parent-child perceptions of self-management, self-efficacy, and health-related quality of life (HRQOL) in children with CIMC.

Method: Parent-children pairs (n = 32) completed three measures before discharge from the hospital (Patient Activation Measure, Self-Efficacy Scale, and Acute Care-Pediatric Quality of Life for Children 8-12 and 13-17 years).

Results: Parents (56.3%) and children (40.6%) reported moderate levels of self-management. HRQOL was correlated with both self-management (r = .441, p = .12) and self-efficacy (r = .464, p = .008). At least 25% to 50% reported low PedsQL subscale scores (< 70), which indicate problems with physical, emotional, social, and mental domains.

Discussion: Our findings support the assessment of not only physical but also mental, emotional, and social needs in children with CIMC. We recommend development and testing strategies promoting self-management and self-efficacy to maximize HRQOL and improve health outcomes in children with CIMC.

Keywords: Chronic illness; health-related quality of life; medical complexity; self-efficacy; self-management.

Conflict of interest statement

The authors declare no conflicts of interest.

Copyright © 2019 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.

Figures

Figure 1.

Distribution of Parental and Child Perceptions of Health Related Quality of Life Score in Children with Chronic Illness & Medical Complexity

Figure 2.

Distribution of Child Perceptions of Health Related Quality of Life Score by Medical Diagnosis (Cardiology & Respiratory, Gastro-Intestinal & Genito-Urinary