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.

OBJECTIVES: We 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. DESIGN: Qualitative, closed, asynchronous, online discussion forums underpinned by an interpretivist framework. SETTING AND PARTICIPANTS: Three 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. RESULTS: There 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). CONCLUSIONS: Participants 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.