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.