Evaluation of a nurse-led multi-component transition program for adolescents with congenital heart disease

Abstract

ObjectiveTo evaluate the effectiveness of the transition program for adolescents with congenital heart disease (CHD) ‘Transition With a Heart’ (TWAH) on disease-related knowledge, quality of life (QoL), transition experiences, and gaps in follow-up. MethodsA study with pre-posttest and control group (post-test) using consecutive sampling, including adolescents with moderate to severely complex CHD, without intellectual disability, aged≥ 12 y, and parents. After weighting, t-tests were performed. A multivariable regression analysis explored the outcomes’ determinants. ResultsIn the intervention group, 28 adolescents and 25 parents were included, and 53 adolescents and 18 parents as controls. Adolescents’ knowledge significantly increased after completing TWAH (from 59.8% to 75.7%;p < 0.01). Their knowledge was positively correlated with TWAH (β = +13.3;p < 0.01). Adolescents’ transition experiences were also positively related to TWAH (general experience: β = +5.5;p < 0.01; transfer satisfaction: β = +0.8; p < 0.01). Adolescents’ QoL was mainly determined by CHD complexity and not by TWAH. No one showed gaps in follow-up. TWAH was not associated with parents’ transition experiences. ConclusionImplementing TWAH substantially improved adolescents’ disease-related knowledge and transition experiences. Practice implicationsThe results regarding transition experiences need to be confirmed by further research. The TWAH design with the person-tailored educational program, skills training, and the transition coordinator can be used in settings with other chronic diseases.