Saly Elisabeth, Simon Judit, Fischer Claudia
Department of Health Economics, Centre for Public Health, Medical University of Vienna, Kinderspitalgasse 15/1, Vienna, 1090, Austria.
BMC Palliat Care. 2025 May 14;24(1):135. doi: 10.1186/s12904-025-01775-6.
Despite the growing significance of patient-reported outcome measures (PROMs) for various purposes, including economic evaluations, implementing them effectively in palliative and end-of-life care settings remains a challenge. This study aimed to identify barriers and facilitators to PROMs data collection in inpatient specialist palliative care settings and to assess data collectors' applied perspectives on four relevant PROMs.
We conducted an explanatory sequential mixed-methods study, including an online survey (N = 29) and qualitative interviews (N = 12) with healthcare professionals and researchers from eleven countries. These participants had direct experience with PROMs data collection in specialist palliative care settings, either as part of the international iLIVE project or the Austrian PallPROMS study. The aim was to identify opportunities for optimising clinical care and other assessment purposes in the future. We conducted a descriptive analysis of the survey data and a thematic analysis of the qualitative data.
The main reflected factors were patients' very limited ability to self-complete PROMs and the optimal timing and duration of assessments. Opinions on the usefulness of different PROMs varied significantly according to the role of the participants. Overall, setting-specific PROMs assessing symptom burden were preferred to more generic quality-of-life/wellbeing measures. Identified barriers and facilitators related to five themes: patient-related factors, data collection processes, PROM type, staff perceptions and organisational factors. Findings also highlighted better information and training needs.
Prioritising care-relevant tools and carefully planning data collection, with main barriers addressed, can significantly increase the successful implementation of PROMs collection in specialist palliative care institutions. Since the preferred PROMs are not directly suitable for health economic evaluation, it is crucial to explore mapping alternatives for this purpose.
尽管患者报告结局测量（PROMs）在包括经济评估在内的各种目的中日益重要，但在姑息治疗和临终关怀环境中有效实施这些测量仍面临挑战。本研究旨在确定住院专科姑息治疗环境中PROMs数据收集的障碍和促进因素，并评估数据收集者对四种相关PROMs的应用观点。
我们进行了一项解释性顺序混合方法研究，包括对来自11个国家的医疗保健专业人员和研究人员进行在线调查（N = 29）和定性访谈（N = 12）。这些参与者在专科姑息治疗环境中有PROMs数据收集的直接经验，要么作为国际iLIVE项目的一部分，要么作为奥地利PallPROMS研究的一部分。目的是确定未来优化临床护理和其他评估目的的机会。我们对调查数据进行了描述性分析，对定性数据进行了主题分析。
主要反映的因素是患者自我完成PROMs的能力非常有限以及评估的最佳时间和持续时间。根据参与者的角色，对不同PROMs有用性的看法差异很大。总体而言，评估症状负担的特定环境PROMs比更通用的生活质量/幸福感测量更受青睐。确定的障碍和促进因素与五个主题相关：患者相关因素、数据收集过程、PROM类型、工作人员看法和组织因素。研究结果还强调了更好的信息和培训需求。
优先考虑与护理相关的工具并仔细规划数据收集，解决主要障碍，可以显著提高专科姑息治疗机构中PROMs收集的成功实施。由于首选的PROMs并不直接适用于卫生经济评估，因此探索为此目的的映射替代方案至关重要。
