{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T14:59:01Z","timestamp":1790348341733,"version":"4.1.0"},"reference-count":33,"publisher":"BMJ","issue":"9","license":[{"start":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T00:00:00Z","timestamp":1790294400000},"content-version":"unspecified","delay-in-days":24,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"NIHR Policy Research Programme","award":["PR-R20-0318-23001"],"award-info":[{"award-number":["PR-R20-0318-23001"]}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2026,8,24]]},"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Qualitative, closed, asynchronous, online discussion forums underpinned by an interpretivist framework.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting and participants<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Analysis<\/jats:title>\n                    <jats:p>Thematic analysis using a codebook approach.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2025-111466","type":"journal-article","created":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T14:05:18Z","timestamp":1790345118000},"page":"e111466","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":0,"title":["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"],"prefix":"10.1136","volume":"16","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4769-1211","authenticated-orcid":false,"given":"Jo","family":"Wray","sequence":"first","affiliation":[{"name":"Heart and Lung Directorate, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0729-4959","authenticated-orcid":false,"given":"Katherine L","family":"Brown","sequence":"additional","affiliation":[{"name":"Heart and Lung Directorate, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fiona","family":"Kennedy","sequence":"additional","affiliation":[{"name":"Barts Health NHS Trust, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2857-1628","authenticated-orcid":false,"given":"Christina","family":"Pagel","sequence":"additional","affiliation":[{"name":"Clinical Operational Research Unit, University College London, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1882-5476","authenticated-orcid":false,"given":"Sonya","family":"Crowe","sequence":"additional","affiliation":[{"name":"Clinical Operational Research Unit, University College London, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2026,9,25]]},"reference":[{"key":"2026092507051224000_16.9.e111466.1","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.110.958405"},{"key":"2026092507051224000_16.9.e111466.2","unstructured":"NHS England . Congenital heart disease services for adults and children: future commissioning arrangements. 2017. Available: https:\/\/www.england.nhs.uk\/wp-content\/uploads\/2017\/11\/06-pb-30-11-2017-congenital-heart-disease-services.pdf"},{"key":"2026092507051224000_16.9.e111466.3","doi-asserted-by":"crossref","DOI":"10.1161\/JAHA.120.017704","article-title":"Survival in Children With Congenital Heart Disease: Have We Reached a Peak at 97%?","volume":"9","author":"Mandalenakis","year":"2020","journal-title":"J Am Heart Assoc"},{"key":"2026092507051224000_16.9.e111466.4","unstructured":"Cunningham D , Franklin R , Bridgewater B , et al . NICOR investigation of mortality from paediatric cardiac surgery in England 2009-12 2013. 2025. 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