The longitudinal association between patient empowerment and patient-reported outcomes: What is the direction of effect?

PLoS One. 2022 Nov 10;17(11):e0277267. doi: 10.1371/journal.pone.0277267. eCollection 2022.

Abstract

Background: Theoretical literature and cross-sectional studies suggest empowerment is associated with other patient-reported outcomes (PROs). However, it is not known if patient empowerment is leading to improvements in other PROs or vice versa.

Aims: The present study aimed to examine the direction of effects between patient empowerment and PROs in young persons with congenital heart disease (CHD).

Methods: As part of the STEPSTONES-CHD trial, adolescents with CHD from seven pediatric cardiology centers in Sweden were included in a longitudinal observational study (n = 132). Data were collected when patients were 16 (T0), 17 (T1) and 18 ½ years old (T2). The Gothenburg Young Persons Empowerment Scale (GYPES) was used to measure patient empowerment. Random intercepts cross-lagged panel models between patient empowerment and PROs (communication skills; patient-reported health; quality of life; and transition readiness) were undertaken.

Results: We found a significant cross-lagged effect of transition readiness over patient empowerment between T1 and T2, signifying that a higher level of transition readiness predicted a higher level of patient empowerment. No other significant cross-lagged relationships were found.

Conclusion: Feeling confident before the transition to adult care is necessary before young persons with CHD can feel in control to manage their health and their lives. Clinicians interested in improving patient empowerment during the transitional period should consider targeting transition readiness.

Publication types

  • Observational Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Child
  • Cross-Sectional Studies
  • Heart Defects, Congenital*
  • Humans
  • Patient Participation*
  • Patient Reported Outcome Measures
  • Quality of Life

Grants and funding

This study is supported by research grants from the Swedish Research Council for Health, Working Life and Welfare-FORTE (grant STYA-2015/0003; http://forte.se/; PM); Swedish Heart-Lung Foundation (grant 20150535; https://www.hjart-lungfonden.se/; PM); Swedish Research Council (grant 2015-02503; https://www.vr.se/; PM); Swedish Children Heart Association (http://www.hjartebarn.se/; ELB). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.