Patient empowerment: a way to improve the communication between young persons and healthcare providers

Abstract

Abstract Background Through patient empowerment, it is possible to support persons with congenital heart disease (CHD) be autonomous, become actively involved in care and gain higher knowledge about their condition, treatment and/or lifestyle recommendations. Conceptual models suggest that patient empowerment is associated with other patient-reported outcomes (PROs). However, available evidence has not concluded whether patient empowerment is leading to improvements in other PROs or viceversa. Purpose The present study aimed to examine the direction of effects between patient empowerment and PROs in young persons with 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) and 17 years old (T1). The Gothenburg Young Persons Empowerment Scale (GYPES) was used to measure patient empowerment on a scale from 15–75, which higher scores denoting a higher level of patient empowerment. Cross-lagged analyses between patient empowerment and PROs were undertaken. These analyses provide information related to the predominant direction of effects over time by comparing standardized betas. The model includes three types of relations, within time relations, which are the correlations between patient empowerment and variable X at T0 and T1. Autoregressive relations, which represent the prediction of patient empowerment or variable X at T1 by their respective value at T0. Cross-lagged is the last type of relation and it is the prediction of variable X at T1 by patient empowerment at T0 or the prediction of patient empowerment at T1 by variable X at T0. The model was replicated four times and the PROs included in the analyses were quality of life (linear analog scale), patient-reported sale (PedsQL generic 4.0), communicating with the healthcare provider (PedsQL cardiac 4.0) and transition readiness (RTQ). Results The sample comprised of 60.6% (n=80) boys. Overall, 13.2% (n=17) had a mild CHD, 62.0% (n=80) a moderate CHD and 24.8% (n=32) a complex CHD. The mean empowerment score was 52.6 (±10.7) at T0 and 53.2 (±11.7) at T1. We found a significant cross-lagged effect between patient empowerment and communication skills (β=0.28), signifying that a higher level of patient empowerment predicted a higher level of communication skills (see Figure 1). No other cross-lagged relationships were found. Conclusions Clinicians interested in improving the communication skills of their patients, may consider whether they can achieve this by targeting patient empowerment. Patient empowerment gives patients the tools they need in order to feel comfortable asking questions and expressing their needs in the care process. Funding Acknowledgement Type of funding sources: Public Institution(s). Main funding source(s): Swedish Heart-Lung Foundation;Swedish Research Council for Health Working Life andWelfare;Swedish Children Heart Association;Swedish Research Council