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Patient empowerment and its correlates in young persons with congenital heart disease

Journal article
Authors Mariela Acuña Mora
Carina Sparud Lundin
Åsa Burström
Katarina Hanseus
Annika Rydberg
Philip Moons
Ewa-Lena Bratt
Published in European Journal of Cardiovascular Nursing
Volume 18
Issue 5
Pages 389-398
ISSN 1474-5151
Publication year 2019
Published at Institute of Health and Care Sciences
Pages 389-398
Language en
Keywords Adolescents, heart defects, congenital, correlates, patient empowerment, young persons
Subject categories Nursing


Objective: The objective of this study was to measure the level of empowerment and identify its correlates in young persons with congenital heart disease. Study design: Patients aged 14–18 years with congenital heart disease, and under active follow-up in one of four paediatric cardiology centres in Sweden were invited to participate in a cross-sectional study. A total of 202 young persons returned the questionnaires. Patient empowerment was measured with the Gothenburg Young Persons Empowerment Scale that allows the calculation of total and subscale scores. Univariate and multivariate linear regression analyses were undertaken to analyse possible correlates, including: sex, age, health behaviours, knowledge of congenital heart disease, quality of life, patient-reported health, congenital heart disease complexity, transition readiness and illness perception. Results: The mean empowerment score was 54.6±10.6 (scale of 15–75). Univariate analyses showed that empowerment was associated with age, quality of life, transition readiness, illness perception, health behaviours and patient-reported health (perceived physical appearance, treatment anxiety, cognitive problems and communication issues). However, multivariable linear regression analyses identified that only transition readiness (β=0.28, P<0.001) and communication (β=0.36, P<0.001) had a positive association with patient empowerment. These variables were also significantly associated with the subscale scores of the empowerment scale of knowledge and understanding (P<0.001), shared decision-making (P<0.001) and enabling others (P<0.01). The overall models’ explained variance ranged from 8% to 37%. Conclusion: Patient empowerment was associated with transition readiness and fewer problems communicating. While it is not possible to establish the directionality of the associations, interventions looking to increase empowerment could benefit from using these variables (or measurements) for evaluation purposes.

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