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

Published online by Cambridge University Press:  11 September 2025

Hajar Habibi Open the ORCID record for Hajar Habibi [Opens in a new window] ,
Emily Tulloh  and
Michael A. Gatzoulis
Hajar Habibi*
Affiliation:
Royal Brompton and Harefield Hospital, London, UK National Heart and Lung Institute, Imperial College, London, UK
Emily Tulloh
Affiliation:
Engineering Department, Brunel University London, UK
Michael A. Gatzoulis
Affiliation:
Royal Brompton and Harefield Hospital, London, UK National Heart and Lung Institute, Imperial College, London, UK
*
Corresponding author: Hajar Habibi; Email: h.habibi@rbht.nhs.uk
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Abstract

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.

Keywords

Digital healthpatient empowermentCHDquestion prompt listsshared decision-making

Information

Type
Original Article
Information
Cardiology in the Young , First View , pp. 1 - 5
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Copyright
© The Author(s), 2025. Published by Cambridge University Press

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