(305) Empowerment in adolescents and young adults with CF

Background: Empowerment, defined as a sense of control and self-efficacy resulting from collaboration and communication between patient and provider [1], is salient to transition readiness and health-related quality of life (HRQoL) in other disease groups [2-3]. Given that adolescence and emerging adulthood are times of increased independence and healthcare responsibility, and that individuals with CF are living well into adulthood, this study examined associations among empowerment, transition readiness, treatment adherence, and HRQoL in a sample of adolescents and young adults (AYAs) with CF. Empowerment may be a modifiable target of interventions to improve CF health outcomes, and thus, we hypothesized that higher levels of empowerment would be positively associated with each of these variables.

Methods: Forty-one AYAs with CF (mean±SD age = 18±2.89, 80.5% White, 70.7% female) completed an electronic survey. Participants were recruited by their CF care team or via social media. Measures included the Gothenburg Young Persons Empowerment Scale, Transition Readiness Assessment Questionnaire, Treatment Adherence Rating Scale, and the physical, role, vitality, emotional, and social subscales of the Cystic Fibrosis Questionnaire-Revised (HRQoL). Covariates were determined using bivariate correlations and hypotheses were tested using hierarchical linear regressions.

Results: Significant covariates for analyses included sex, age, BMI, and mental health symptoms. Empowerment was significantly, positively associated with transition readiness (β = .621) and adherence (β = .485) even after controlling for covariates. In the final regression models, empowerment added 26.7% of variance to transition readiness and 22.6% of the variance in adherence. Empowerment was not associated with any domains of HRQoL using a significance threshold adjusted with a Bonferroni correction (p< .01).

Conclusions: The present study found that higher levels of empowerment were associated with better transition readiness and better adherence. An association between empowerment and HRQoL was not supported. Thus, when preparing AYAs for transition or encouraging adherence, empowering AYAs may be an important first step. Further investigation on how to best empower AYAs with CF as well as factors contributing to empowerment in this population is warranted.

Acknowledgements: This work was supported by the Cystic Fibrosis Foundation [award number 002620H221, 2021]

References: [1] Small N, Bower P, Chew-Graham CA, Whalley D, Protheroe J. Patient empowerment in long-term conditions: Development and preliminary testing of a new measure. BMC Health Serv Res. 2013;13;1–15. https://doi.org/10.1186/1472-6963-13-263

[2] Acuña Mora M, Sparud-Lundin C, Burström Å, Hanseus K, Rydberg A, Moons P, & Bratt EL. Patient empowerment and its correlates in young persons with congenital heart disease. Eur J Cardiovasc Nurs. 2019;18:389–398. https://doi.org/10.1177/1474515119835434.

[3] Kaal SEJ, Husson O, van Duivenboden S, Jansen R, Manten-Horst E, Servaes P, Prins JB, van den Berg SW, van der Graaf WTA. Empowerment in adolescents and young adults with cancer: Relationship with health-related quality of life. Cancer. 2017;123: 4039–4047. https://doi.org/10.1002/cncr.30827.