ArticleBMJ open2026
Data that matter: what outcomes matter to patients with congenital heart disease and their carers and which should be routinely measured? A qualitative asynchronous online discussion forum.
Article in BMJ open, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Authors and funding
5 authors.
Funding
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Abstract
objectivesWe wanted, as part of a wider study, to elicit perspectives of patients with congenital heart disease (CHD) and/or their parents/carers about which outcomes of CHD and/or cardiac surgery matter and what should be measured and reported.
designQualitative, closed, asynchronous, online discussion forums underpinned by an interpretivist framework. SETTING AND
participantsThree patient charities in the UK set up and moderated separate online forums for adult patients with CHD/carers, adolescent patients with CHD and parents/carers of children and young people with CHD. ANALYSIS: Thematic analysis using a codebook approach.
resultsThere were five forums in total; 343 participants signed up, two-thirds of whom were adult patients (n=235; 69%). Four themes reflecting different types of outcomes were identified: clinical outcomes related to surgery (eg, diagnosis-based survival, complications, readmission and reintervention rates); other clinical outcomes (eg, long-term survival, use of medications, pregnancy risks and outcomes); outcomes related to service provision (eg, availability of support services, cancellations, delayed follow-up); and patient-reported outcomes (eg, quality of life, mental health outcomes).
conclusionsParticipants identified a range of outcomes about which they wanted more information but within the context of an individualised approach to how much, when and what information is provided. The importance of achieving a balance between knowing so much that it has a detrimental impact on mental health and not knowing enough so that patients/carers are unable to make informed decisions was emphasised.
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