More than survival-supporting self-management in youth with congenital heart disease: a commentary

This invited commentary refers to ‘Self-management interventions to improve health outcomes in youth living with congenital heart disease: a systematic review and narrative synthesis’ by R.J. Loor-Torres et al., https://doi.org/10.1093/eurjcn/zvaf129. The transition from paediatric to adult care represents a critical period in life for adolescents and young adults living with congenital heart disease (CHD).1–3 Despite remarkable advances in the survival of children with CHD,4 optimizing long-term outcomes depends increasingly on non-medical factors—among them, the individual’s capacity for self-management.5 In this context, the systematic review by Loor-Torres et al.6 offers a timely and insightful synthesis of the literature on self-management interventions, specifically targeting adolescents and young adults with CHD. This systematic review aimed to evaluate the impact of self-management interventions grounded in self-efficacy theory on health and patient-reported outcomes in youth aged 15–24 years living with CHD.6 Recognizing the challenges faced by adolescents transitioning from paediatric to adult care, the authors focused on interventions designed to enhance self-management capabilities, a critical aspect of long-term health maintenance in this population. Following the PRISMA guidelines7 and a registered PROSPERO protocol, the authors conducted a comprehensive literature search across six databases ranging from years 1973 to 2024.6 Eligible studies were interventional in design and explicitly incorporated self-efficacy as a framework for behaviour change. Out of 54 initially identified studies, four met the inclusion criteria, encompassing a total of 150 participants aged 16–19 with moderate to severe CHD. The findings from the four included studies, although limited in number and heterogeneous in design, provide encouraging results. Interventions varied in duration, intensity, and delivery mode (e.g. face-to-face, online, and hybrid formats), yet several common threads emerged: improved disease-related knowledge, transition readiness, and—most notably—moderate effect sizes in measures of self-efficacy and empowerment. For instance, Hwang et al.’s intervention,8 explicitly structured around Bandura’s four sources of self-efficacy,9 yielded a Cohen’s d of 0.78, a moderate-to-large effect.10 Bratt et al.’s STEPSTONES trial, although primarily aimed at empowerment, also demonstrated a significant increase in capabilities relevant for self-management.11 These findings reinforce the theoretical and clinical importance of targeting self-efficacy as a mechanism for behaviour change. However, as the authors note, the evidence linking such interventions to ‘hard’ clinical endpoints—hospitalizations, cardiac reinterventions, or disease progression—remains scarce. Only one study (Mackie et al.12) assessed these outcomes, and no significant between-group differences were found. This gap reflects both the methodological complexity and the long natural history of CHD. Small sample sizes, brief follow-up periods, and variability in lesion complexity further complicate the evaluation of clinical effects.13 Nevertheless, dismissing the value of these interventions based on absent clinical outcomes would be short-sighted. Self-management interventions are inherently longitudinal in nature, and their true impact may only be captured through long-term studies that incorporate both biomedical and psychosocial endpoints.14 The review also surfaces a broader issue: the disconnect between clinical guidelines and intervention research. While both the ESC15 and AHA/ACC guidelines16 emphasize the need for structured transition planning, patient education, and empowerment, there is relatively little operationalization of how self-efficacy—the key construct underpinning effective self-management—is to be fostered in real-world clinical practice. This review makes an important contribution by highlighting intervention components that map onto Bandura’s four sources of self-efficacy9: mastery experiences (e.g. goal setting), vicarious learning (e.g. peer groups), verbal persuasion (e.g. provider encouragement), and managing emotional states (e.g. stress reduction). Future guidelines and quality improvement initiatives should more explicitly integrate these components. Another strength of the review lies in its conceptual clarity. By distinguishing between empowerment and self-management—and situating self-efficacy as the link between the two—the authors provide a helpful framework for researchers and clinicians alike. Empowerment is indeed multidimensional and includes both structural and individual-level factors.17 Self-management interventions can directly target the latter, but their success often depends on supportive healthcare environments, youth-friendly communication, and continuity of care18—all of which remain inconsistently implemented across care settings. From a nursing perspective, several implications are relevant. Cardiovascular nurses often serve as co-ordinators of care, educators, and liaisons in the transition process from paediatric to adult care and life. As shown in the STEPSTONES and CHAPTER 2 interventions,12,19 nurse-led models are both feasible and effective. Investing in transition co-ordinators or advance practice nurses trained in adolescent health, motivational interviewing, and person-centred care may yield significant returns in terms of self-efficacy, adherence, and satisfaction with care.18–20 Still, several gaps warrant attention. The lack of studies from low- and middle-income countries limits the generalizability of findings. Additionally, few studies adequately addressed cultural or linguistic adaptations, socioeconomic barriers, or comorbidities such as neurodevelopmental conditions, all of which can profoundly affect self-management capacity. Greater use of co-design methodologies—engaging adolescents, parents, and clinicians in the design and evaluation of interventions—may help ensure relevance, feasibility, and uptake. The review concludes with a call for more robust research. Future studies should not only use larger, more diverse samples and longer follow-up but also incorporate mixed methods approaches to capture lived experiences, contextual barriers, and unintended consequences.21 Moreover, the inclusion of implementation outcomes (e.g. acceptability, fidelity, and sustainability) will be essential if promising interventions are to be translated into scalable models of care. Markus Saarijärvi (Conceptualization [lead], Investigation [lead], Methodology [lead], Project administration [lead], Resources [lead], Software [lead], Writing—original draft [lead], Writing—review & editing [lead]) No funding is supporting this work. No new data were generated or analysed in support of this research.