Burner-Fritsch Isabel, Bolzani Anna, Hriskova Katerina, Kolmhuber Stefanie, Bausewein Claudia, Hodiamont Farina
Department of Palliative Medicine, LMU University Hospital, LMU Munich, Munich, Germany.
Palliat Med. 2023 Feb;37(2):265-274. doi: 10.1177/02692163221141487. Epub 2023 Jan 4.
Patient-reported outcome measures have the potential to improve outcomes, quality, and effectiveness of care. Digital use of patient-reported outcome measures could be an option to foster implementation in palliative care. The study focused on developing and testing an electronic patient-reported outcome measure in specialised palliative home care. As part of this study, we examined setting-specific challenges for the development of the measure.
We aimed to identify and explore challenges for the development of electronic patient-reported outcome measures as standardised assessment in specialised palliative home care.
Qualitative approach with semi-structured interviews and focus groups. Data were thematically analysed using the framework method.
SETTING/PARTICIPANTS: Patients and professionals from five German palliative home care teams.
Patients described potential problems in using electronic questionnaires due to their deteriorating health. Answering the electronic questionnaire encouraged patients to reflect on their current palliative situation, which was partly perceived as burdensome. Identified concerns and questions regarding the future roll-out of electronic patient-reported outcome measurement addressed the process of receiving and using the provided information in clinical care routine. Challenging factors on organisational and structural level were the potential undermining of the established 24-h emergency call system and the potential use for patients.
Our results provide a multifaceted picture of challenges developing electronic systems for patient-reported outcome measurement in palliative home care on the individual and organisational level. The study underpins the benefit of stakeholder involvement creating digital health innovations and emphasises the importance to therefore mind setting specific culture.
患者报告的结局测量有潜力改善医疗护理的结局、质量和有效性。以数字化方式使用患者报告的结局测量可能是促进姑息治疗实施的一种选择。该研究聚焦于在专业姑息家庭护理中开发和测试一种电子患者报告的结局测量工具。作为本研究的一部分，我们考察了该测量工具开发过程中特定环境下的挑战。
我们旨在识别和探索在专业姑息家庭护理中开发电子患者报告的结局测量工具作为标准化评估所面临的挑战。
采用半结构化访谈和焦点小组的定性研究方法。使用框架法对数据进行主题分析。
研究背景/参与者：来自五个德国姑息家庭护理团队的患者和专业人员。
患者描述了由于健康状况恶化在使用电子问卷时可能遇到的问题。回答电子问卷促使患者反思自己当前的姑息治疗状况，部分患者认为这有些负担。在电子患者报告的结局测量未来推广方面发现的担忧和问题涉及在临床护理常规中接收和使用所提供信息的过程。在组织和结构层面具有挑战性的因素包括既定的24小时紧急呼叫系统可能受到的破坏以及对患者的潜在用途。
我们的结果从个体和组织层面多方面呈现了在姑息家庭护理中开发用于患者报告结局测量的电子系统所面临的挑战。该研究证实了利益相关者参与创建数字健康创新的益处，并强调了考虑特定环境文化的重要性。
