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To investigate what works when using Patient-Reported Outcome Measures (PROMs), for whom, in what contexts, and why in four Value-Based Healthcare (VBHC) programmes.
Realist evaluation.
Evaluation of Heart Failure, Parkinson's Disease, Epilepsy and Cataract surgery programmes using data from a scoping review, documentary analysis, questionnaires, quantitative routinely collected data and semi-structured interviews with staff, patients and carers (July 2022–August 2023). Programme theories and logic models were developed, tested and refined.
We conducted 105 interviews (67 patients, 21 carers and 17 staff) and collected data from 230 patients (66 Epilepsy, 140 Heart Failure and 24 Parkinson's Disease) and 14 staff via questionnaires. Clinicians used PROMs data to regularly monitor patients with Heart Failure and Epilepsy, which resulted in better triage and tailoring treatment, prioritisation of access based on the urgency of need, and facilitation of referral to relevant professionals. In Heart Failure, this further resulted in a more efficient provision of care and better use of resources, care closer to home, improved health outcomes (e.g., better symptom management) and service redesign. The same was not observed in Epilepsy, as patients who required mental health treatment had to be referred, but they were not always able to access specialist services. PROMs were discontinued in Cataract surgery services mainly due to the lack of integrated IT systems, which caused an increased workload and staff resistance. In Parkinson's Disease, patients were asked to complete PROMs even though the information was not consistently being used.
Findings challenge the orthodoxy that implementing PROMs is universally good and brings about real improvements in patient outcomes in a VBHC context. PROMs are generally ill-suited for long-term use with patients in routine care without further adaptation. Greater staff and patient involvement are imperative to enhance the acceptability and relevance of the programmes.
Patient-Reported Outcome Measures can improve care when embedded in well-supported systems. Implementation must be realistic, involve staff and patients, and be underpinned by clear leadership and robust digital infrastructure. Co-designed patient-facing tools can improve accessibility and engagement.
What problem did the study address? There is limited evidence on how Patient-Reported Outcome Measures function across different routine healthcare contexts. What were the main findings? Patient-Reported Outcome Measures improved care in Heart Failure but not in other services, largely due to contextual barriers. Where and on whom will the research have an impact? Findings are relevant for clinicians, service designers, and policymakers seeking to implement meaningful person-centred outcome measurement in long-term conditions.
We adhered to Realist and Meta-narrative Evidence Syntheses: Evolving Standards II guidance and to the Guidance for Reporting Involvement of Patients and the Public.
The study was developed alongside a wide range of patient and public stakeholders involved in the Aneurin Bevan University Health Board Value-Based Healthcare programme, third sector and specific individuals and groups representing the four included services (i.e., St. David's Hospice Care, British Heart Foundation, Digital Communities Wales, Epilepsy Action, Digital Communities Wales, Parkinson's UK Cymru, Race Equality First, Aneurin Bevan Community Health Council, Value- Based Healthcare Patient Reference Group and Wales Council of the Blind). A total of 10 virtual meetings were strategically planned to address gaps, assist in the interpretation of findings, and ensure that outcomes were pertinent and accessible to the specific needs and circumstances of under-represented or vulnerable groups.
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