Bianchim Mayara S, Crane Ellie, McLaughlin Leah, Stringer Carys, Roberts Gareth, Cahill Adele, Noyes Jane
School of Health Sciences, Bangor University, Bangor, UK.
Aneurin Bevan University Health Board, Caerleon, UK.
J Adv Nurs. 2025 Jul 28. doi: 10.1111/jan.70018.
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.
IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: 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.
调查在四个基于价值的医疗保健（VBHC）项目中，使用患者报告结局量表（PROMs）时哪些措施有效、针对哪些人群、在何种背景下有效以及原因。
现实主义评价。
利用范围综述、文献分析、问卷调查、常规收集的定量数据以及对工作人员、患者和护理人员的半结构化访谈（2022年7月至2023年8月）对心力衰竭、帕金森病、癫痫和白内障手术项目进行评价。开发、测试并完善项目理论和逻辑模型。
我们进行了105次访谈（67名患者、21名护理人员和17名工作人员），并通过问卷调查从230名患者（66名癫痫患者、140名心力衰竭患者和24名帕金森病患者）和14名工作人员那里收集了数据。临床医生使用PROMs数据定期监测心力衰竭和癫痫患者，这带来了更好的分诊和个性化治疗、根据需求紧迫性确定优先就诊顺序以及促进转诊至相关专业人员。在心力衰竭方面，这进一步带来了更高效的护理提供和资源的更好利用、离家更近的护理、改善的健康结局（如更好的症状管理）以及服务重新设计。在癫痫方面则未观察到同样的情况，因为需要心理健康治疗的患者必须转诊，但他们并不总是能够获得专科服务。白内障手术服务中PROMs被停用，主要是因为缺乏集成的信息技术系统，这导致工作量增加和工作人员抵触。在帕金森病方面，尽管信息未得到持续使用，但仍要求患者完成PROMs。
研究结果挑战了在VBHC背景下实施PROMs普遍有益且能切实改善患者结局的正统观念。PROMs通常不太适合在常规护理中与患者长期使用，而无需进一步调整。必须让工作人员和患者更多地参与进来，以提高项目的可接受性和相关性。
对专业和/或患者护理的启示：患者报告结局量表在嵌入得到充分支持的系统时可改善护理。实施必须切实可行，让工作人员和患者参与，并以明确的领导和强大的数字基础设施为支撑。共同设计的面向患者的工具可提高可及性和参与度。
该研究解决了什么问题？关于患者报告结局量表在不同常规医疗保健背景下如何发挥作用的证据有限。主要发现是什么？患者报告结局量表改善了心力衰竭的护理，但在其他服务中未改善，主要是由于背景障碍。该研究将对哪些方面和哪些人产生影响？研究结果与寻求在长期病症中实施有意义的以患者为中心的结局测量的临床医生、服务设计师和政策制定者相关。
我们遵循了现实主义和元叙事证据综合：不断发展的标准II指南以及患者和公众参与报告指南。
该研究是与广泛的患者和公众利益相关者共同开展的，这些利益相关者参与了阿neurin Bevan大学健康委员会基于价值的医疗保健项目、第三部门以及代表四个纳入服务的特定个人和团体（即圣大卫临终关怀护理、英国心脏基金会、威尔士数字社区、癫痫行动、威尔士数字社区、英国帕金森病协会威尔士分会、种族平等第一、阿neurin Bevan社区健康委员会、基于价值的医疗保健患者参考小组和威尔士盲人理事会）。共精心策划了10次虚拟会议，以解决差距、协助解释研究结果，并确保结果与代表性不足或弱势群体的特定需求和情况相关且易于理解。
