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

IF 0.7 4区医学 Q4 CARDIAC & CARDIOVASCULAR SYSTEMS

Cardiology in the Young Pub Date : 2025-09-11 DOI:10.1017/S1047951125109396

Hajar Habibi, Emily Tulloh, Michael A Gatzoulis

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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.

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赋予先天性心脏病患者权力：共同决策的数字问题提示列表的开发：一项试点研究。

背景：医疗保健的进步显著改善了冠心病患者的前景，目前超过97%的冠心病患者存活于成年期。这一不断增长的人口需要终身护理和支持来控制他们的病情。数字医疗创新，如“问我任何问题”（AMA）工具，旨在增强患者的权能，并改善与临床医生的合作。方法：本初步研究共邀请70例患者参与，其中58例完成问卷调查，应答率为82.9%。患者在会诊前完成一个数字问题提示列表（QPL），从预定义的问题列表中选择关键主题。在进行试验研究之前，已获得该机构的许可。结果：患者经常选择与预后、年龄、情绪健康、生活方式和未来潜在干预措施有关的问题。该工具允许更个性化的咨询，并促进患者积极参与。结论：AMA工具在参与ACHD患者和支持共同决策方面具有可行性。需要进一步的研究来优化系统集成和评估长期结果。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Cardiology in the Young 医学-小儿科

CiteScore

1.70

自引率

10.00%

发文量

715

审稿时长

4-8 weeks

期刊介绍： Cardiology in the Young is devoted to cardiovascular issues affecting the young, and the older patient suffering the sequels of congenital heart disease, or other cardiac diseases acquired in childhood. The journal serves the interests of all professionals concerned with these topics. By design, the journal is international and multidisciplinary in its approach, and members of the editorial board take an active role in the its mission, helping to make it the essential journal in paediatric cardiology. All aspects of paediatric cardiology are covered within the journal. The content includes original articles, brief reports, editorials, reviews, and papers devoted to continuing professional development.