Empowering Patients with Congenital Heart Disease: Development of a Digital Question Prompt List for Shared Decision-Making: A Pilot Study.

BACKGROUND

Advancements in healthcare have significantly improved the prospect of patients with CHD, with over 97% now surviving adulthood. This growing population requires lifelong care and support to manage their condition. Digital health innovations, such as the "Ask Me Anything" (AMA) tool, aim to empower patients and improve collaboration with clinicians.

METHODS

In this pilot study, 70 patients were invited to participate, and 58 completed the questionnaire (response rate: 82.9%). Patients completed a digital question prompt list (QPL) prior to their consultations to select key topics from a predefined list of questions. Permission from the institution was obtained before conducting the pilot study.

RESULTS

Patients frequently selected questions related to prognosis, ageing, emotional well-being, lifestyle, and potential future interventions. The tool allowed for more personalised consultations and promoted active patient participation.

CONCLUSIONS

The AMA tool demonstrates feasibility in engaging ACHD patients and supporting shared decision-making. Further research is needed to optimise system integration and evaluate long-term outcomes.