van der Steen Jenny T, Heck Sten, Juffermans Carla Cm, Garvelink Mirjam Marjolein, Achterberg Wilco P, Clayton Josephine, Thompson Genevieve, Koopmans Raymond Tcm, van der Linden Yvette M
Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands
Primary and Community Care, Radboud university medical center, Nijmegen, The Netherlands.
BMJ Open. 2021 Apr 12;11(4):e044591. doi: 10.1136/bmjopen-2020-044591.
In oncology and palliative care, patient question prompt lists (QPLs) with sample questions for patient and family increased patients' involvement in decision-making and improved outcomes if physicians actively endorsed asking questions. Therefore, we aim to evaluate practitioners' perceptions of acceptability and possible use of a QPL about palliative and end-of-life care in dementia.
Mixed-methods evaluation study of a QPL developed with family caregivers and experts comprising a survey and interviews with practitioners.
Two academic medical training centres for primary and long-term care in the Netherlands.
Practitioners (n=66; 73% woman; mean of 21 (SD 11) years of experience) who were mostly general practitioners and elderly care physicians.
The main survey outcome was acceptability measured with a 15-75 acceptability scale with ≥45 meaning 'acceptable'.
The survey response rate was 21% (66 of 320 participated). The QPL was regarded as acceptable (mean 51, SD 10) but 64% felt it was too long. Thirty-five per cent would want training to be able to answer the questions. Those who felt unable to answer (31%) found the QPL less acceptable (mean 46 vs 54 for others; p=0.015). We identified three themes from nine interviews: (1) enhancing conversations through discussing difficult topics, (2) proactively engaging in end-of-life conversations and (3) possible implementation.
Acceptability of the QPL was adequate, but physicians feeling confident to be able to address questions about end-of-life care is crucial when implementing it in practice, and may require training. To facilitate discussions of advance care planning and palliative care, families and persons with dementia should also be empowered to access the QPL themselves.
在肿瘤学和姑息治疗中，如果医生积极支持提问，带有患者及家属示例问题的患者问题提示清单（QPLs）可增加患者参与决策并改善治疗效果。因此，我们旨在评估从业者对一份关于痴呆症姑息和临终关怀的QPL的可接受性及可能的使用情况的看法。
对一份与家庭护理人员和专家共同制定的QPL进行混合方法评估研究，包括对从业者的调查和访谈。
荷兰的两个初级和长期护理学术医学培训中心。
从业者（n = 66；73%为女性；平均经验21年（标准差11年）），主要是全科医生和老年护理医生。
主要调查结果是用15 - 75的可接受性量表衡量的可接受性，≥45表示“可接受”。
调查回复率为21%（320人中66人参与）。QPL被认为是可接受的（平均51，标准差10），但64%的人认为它太长。35%的人希望接受培训以便能够回答这些问题。那些觉得无法回答的人（31%）认为QPL的可接受性较低（其他人平均为54，他们平均为46；p = 0.015）。我们从9次访谈中确定了三个主题：（1）通过讨论困难话题加强对话，（2）积极参与临终对话，（3）可能的实施。
QPL的可接受性是足够的，但在实际应用中，医生有信心能够回答临终关怀问题至关重要，可能需要培训。为了促进预先护理计划和姑息治疗的讨论，痴呆症患者及其家属也应被赋予自行获取QPL的权力。
