Co-creating a patient-driven digital monitoring agenda for thoracic aortic disease: a multiphase qualitative study.

OBJECTIVES

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.

DESIGN

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).

SETTING

A single Dutch tertiary referral centre for TAD, 2024-2025.

PARTICIPANTS

Adults (≥18 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.

OUTCOME MEASURES: 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.

RESULTS

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.

CONCLUSION

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.