{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T14:59:02Z","timestamp":1790348342524,"version":"4.1.0"},"reference-count":18,"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\/"}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2026,9,15]]},"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>To identify, through structured co-creation with patients across the thoracic aortic disease (TAD) spectrum, which domains of between-visit monitoring patients themselves consider meaningful and to translate these into a patient-driven digital monitoring agenda.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Qualitative co-creation study in four sequential phases: secondary analysis of existing patient engagement material (A), targeted focus groups addressing under-represented perspectives (B), a mixed-stakeholder co-design workshop (C) and a member-check validation session (D). Analysis used reflexive thematic analysis and framework synthesis. Reported following Consolidated Criteria for Reporting Qualitative Research (COREQ).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>A single Dutch tertiary referral centre for TAD, 2024\u20132025.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>Adults (\u226518 years) with TAD, purposively sampled across three trajectories: surgically managed acute dissection, elective aortic surgery and aneurysm or bicuspid aortic valve under surveillance. Phase A, 45 participants in six sessions; phase B, 13 in two focus groups; phase C, 9 (6 patients, 3 healthcare professionals); phase D, 9 participants from earlier phases.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Outcome measures<\/jats:title>\n                    <jats:p>Patient-derived domains considered relevant to digital monitoring and their translation into components of a monitoring agenda, together with the conditions participants regarded as necessary for such monitoring to be acceptable.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Five domains recurred across trajectories: managing uncertainty and fear of recurrence, interpreting symptoms and bodily signals, blood pressure self-monitoring and variability, life participation including activity and reproductive decisions and accessibility and proportionality. These were translated into an agenda comprising symptom contextualisation, longitudinal blood pressure trends, patient-reported outcomes, contextual activity feedback, educational decision support and transparent escalation pathways. Participants framed monitoring as an adjunct to imaging surveillance, not a replacement, emphasising interpretability and restrained alerting.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Structured patient engagement and iterative co-design produced a patient-driven digital monitoring agenda for TAD integrating biomedical and psychosocial dimensions, describing priorities articulated by these participants rather than their distribution and providing a foundation for developing and evaluating hybrid digital surveillance models in aortic care.<\/jats:p>\n                  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