Department of Oncology and Palliative Care, Zealand University Hospital, Sygehusvej 10, 4000, Roskilde, Denmark.
Department of Regional Health Research, University of Southern Denmark, J. B. Winsløws Vej 19, 5000, Odense C, Denmark.
BMC Palliat Care. 2021 Feb 18;20(1):33. doi: 10.1186/s12904-021-00727-0.
Ideally, patients with life-threatening illness who are suffering from multiple symptoms and reduced quality of life should receive palliative care that addresses their specific needs. The many well-defined clinical pathways may not always leave room for a person-centred and individual approach with respect to symptom control, psychosocial and spiritual support, and practical issues. In deciding how to organize outpatient specialist palliative care (SPC), it is relevant to include the perspectives of both patients and families. Thus, the aim of this study was to compare two models for outpatient SPC: first contact between patient, next-of-kin and doctor/nurse in the form of a home visit; and first visit in the hospital setting.
The study was a comparative mixed methods study with follow-up at one and 3 months. It started with a quantitative strand in the form of a 38-item questionnaire. Data were analysed using linear mixed effects models, with maximum likelihood estimation for each outcome variable. The repeated measurements on patient level were modelled by including random intercepts of patients in the mixed model.
In total, 190 participants were enrolled, of whom 102 answered the first questionnaire. No differences were found between the two SPC interventions when development in satisfaction with care, communication or overall quality of life were compared. At baseline, a significantly higher score for satisfaction was found, in favour of first visit taking place in the hospital setting (65.91 vs. 55.83; p = 0.03) measured by FAMCARE-P16, and more patients were satisfied with availability of nurses and their abilities to listen and communicate than of doctors.
Specialist palliative care is in request for many patients in the late phase of their disease. We found no significant differences in satisfaction with care, communication with health professionals or in overall quality of life between the two models. This may imply that access to SPC is more important than the model that is applied, and that a person-centred approach together with time available may matter more than the context. These two factors should be considered when implementing SPC.
理想情况下，患有危及生命的疾病、有多种症状且生活质量下降的患者应接受姑息治疗，以满足其特定需求。许多定义明确的临床路径可能并不总是为针对症状控制、心理社会和精神支持以及实际问题的以人为本和个体化方法留出空间。在决定如何组织门诊专科姑息治疗（SPC）时，纳入患者和家属的观点是相关的。因此，本研究旨在比较两种门诊 SPC 模式：患者、近亲与医生/护士的首次接触形式为家访；以及首次在医院就诊。
这是一项具有 1 个月和 3 个月随访的比较性混合方法研究，首先以 38 项问卷的形式进行了一项定量研究。使用线性混合效应模型分析数据，并对每个结果变量进行最大似然估计。通过在混合模型中包含患者的随机截距，对患者水平上的重复测量进行建模。
共纳入 190 名参与者，其中 102 名回答了第一个问卷。在比较满意度、沟通或整体生活质量的发展时，两种 SPC 干预之间没有差异。在基线时，通过 FAMCARE-P16 测量，选择在医院就诊的患者满意度评分显著更高（65.91 分 vs. 55.83 分；p=0.03），并且更多患者对护士的可用性以及他们倾听和沟通的能力感到满意，而不是对医生的满意度。
许多处于疾病晚期的患者都需要专科姑息治疗。我们发现两种模式之间在对护理的满意度、与卫生专业人员的沟通或整体生活质量方面没有显著差异。这可能意味着获得 SPC 比应用的模式更重要，而以患者为中心的方法和可用时间可能比环境更重要。在实施 SPC 时，应考虑这两个因素。
