Harvey Benjamin P, Barenfeld Emmelie, Öhlén Joakim, Bergholtz Jana, Orre Carl Johan, Lindroth Tomas, Gyllensten Hanna
Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Box 457, Gothenburg, 405 30, Sweden.
University of Gothenburg Centre for Person-Centred Care (GPCC), Sahlgrenska Academy, Box 457, Gothenburg, 405 30, Sweden.
BMC Health Serv Res. 2025 May 27;25(1):758. doi: 10.1186/s12913-025-12897-1.
New healthcare programmes that focus on the encounter between patients and healthcare services, such as those advocated for in different forms on "centredness", are being pushed to the forefront of the healthcare agenda to, amongst other goals, combat rising costs. However, lack of consensus regarding which outcomes should be evaluated to cover the needs of all stakeholders creates barriers to prioritising between competing alternatives. The aim of this research was to develop a core outcome set (COS) for the evaluation of new healthcare programmes adopting centredness within the encounter between patients and healthcare services.
A COS was developed according to the Core Outcome Measures in Effectiveness Trials guidelines, using the DelphiManager online platform. A list of outcomes was collected from literature, stakeholder group representatives and patient partners. The outcomes underwent a two-round modified Delphi method with representative groups including managerial decision-makers, researchers, health workers, and patients/patient representatives. Outcomes scored 7-9 (critical) by 70% or more participants and 1-3 (limited importance) by no more than 15% were deemed to have reached consensus at the conclusion of round two. The COS was finalised during the consensus meeting, conducted with patient partners and written input from stakeholder representatives.
An initial list of 65 outcomes from literature were refined to 51 items at the end of the pilot phase. At the completion of round two, eight outcomes had been scored critical by all stakeholder groups. A further 28 outcomes scored critical by at least one stakeholder group were included during the consensus meeting. The COS included 36 outcomes divided into six categories, i.e., general health, capabilities and support systems, care processes, organisational, economics, and eHealth.
This was a first attempt at developing a COS for new healthcare programmes that adopt centredness within the encounter between patients and healthcare services, resulting in 36 outcomes divided into six categories judged critical by many of the included stakeholders. While providing a first step towards understanding stakeholder needs for implementing or participating in these healthcare programmes, variation between groups highlights the difficulties in allocating resources and attributing value to healthcare programmes practicing centredness.
Two patient partners formed an integral part of the research team by actively participating in the study design, participant recruitment, result analysis and writing of the final manuscript.
新的医疗保健计划聚焦于患者与医疗服务之间的互动，比如以不同形式倡导的“以患者为中心”理念，正被推向医疗保健议程的前沿，以实现控制成本等诸多目标。然而，对于应评估哪些结果以满足所有利益相关者的需求缺乏共识，这为在相互竞争的方案中进行优先级排序设置了障碍。本研究的目的是制定一套核心结局集（COS），用于评估在患者与医疗服务互动中采用以患者为中心理念的新医疗保健计划。
根据有效性试验中的核心结局指标指南，使用DelphiManager在线平台制定核心结局集。从文献、利益相关者群体代表和患者合作伙伴处收集了一系列结局指标。这些结局指标经过两轮改进的德尔菲法，参与的代表性群体包括管理决策者、研究人员、医护人员以及患者/患者代表。在第二轮结束时，70%或更多参与者评分为7 - 9分（关键）且不超过15%的参与者评分为1 - 3分（重要性有限）的结局指标被视为达成共识。核心结局集在共识会议期间最终确定，会议由患者合作伙伴参与，并纳入了利益相关者代表的书面意见。
文献中最初列出的65项结局指标在试点阶段结束时精简至51项。第二轮结束时，所有利益相关者群体都将8项结局指标评为关键指标。在共识会议期间，又纳入了至少一个利益相关者群体评为关键指标的另外28项结局指标。核心结局集包括36项结局指标，分为六个类别，即总体健康、能力与支持系统、护理流程、组织、经济和电子健康。
这是首次尝试为在患者与医疗服务互动中采用以患者为中心理念的新医疗保健计划制定核心结局集，最终得到了分为六个类别的36项结局指标，许多参与的利益相关者认为这些指标至关重要。虽然这为理解利益相关者在实施或参与这些医疗保健计划方面的需求迈出了第一步，但不同群体之间的差异凸显了在为践行以患者为中心理念的医疗保健计划分配资源和赋予价值方面的困难。
两名患者合作伙伴通过积极参与研究设计、参与者招募、结果分析和最终稿件撰写，成为研究团队不可或缺 的一部分。
