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

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.

The Assessment of Patient-Reported Outcomes for the Authorisation of Medicines in Europe: A Review of European Public Assessment Reports from 2017 to 2022

“…The advantage of using PROs in clinical practice and research is that they provide a more holistic interpretation and a comprehensive assessment of the outcomes of the intervention delivered [ 9 – 11 ]. In clinical practice, patient-reported outcomes allow to assess the severity of intangible symptoms (e.g., fatigue, depression, insomnia), to inform treatment strategies and track the effects of treatments over time, to guide follow-up visits and examination scheduling [ 6 ], to improve treatment adherence and patient empowerment [ 12 ]. In clinical research, the inclusion of PROs in data collection can provide valuable evidence of the risk-benefit profile of treatment from a patient perspective, inform drug approvals and clinical guidelines, and facilitate the interpretation of trial results by target patient populations [ 13 ].…”

Transition competence as an indicator of health outcomes related to transition

“…The importance of considering patient‐reported outcomes and transition readiness in a more complex context was demonstrated by Acuña Mora et al (2022), who showed that readiness to transition had a significant positive cross‐lagged effect on patient empowerment at subsequent measurement time points. This effect was not shown for quality of life, communication skills and patient‐reported health.…”