Department of General Practice/ Family Medicine, Philipps-University Marburg, Karl-von-Frisch-Strasse 4, 35032, Marburg, Germany.
Professional Association of Specialized Outpatient Palliative Care in Hesse, Wiesbaden, Germany.
BMC Palliat Care. 2018 Oct 2;17(1):111. doi: 10.1186/s12904-018-0363-8.
In Germany, patients suffering from life-limiting conditions are eligible for specialized outpatient palliative care (SOPC). Evaluation of the quality of this service lacks currently integration of patient-relevant outcomes. There is also no scientific consensus how to prove quality of care in the special context of SOPC adequately. Existing quality reports are primarily based on descriptive structural data which do not allow for estimation of process quality or result quality. The ELSAH study ('Evaluation of Specialized Outpatient Palliative Care in the German state of Hesse') aims to choose - or, if necessary, to adopt - to evaluate and to implement a suit of measures to assess, evaluate and monitor the quality of specialized, home-based palliative care.
All 22 SOPC teams providing their services in the state of Hesse, Germany, participate in the ELSAH study. The study is divided in two phases: a preparation phase and a main study phase. Based on the findings of the preparation phase we have chosen a preliminary set of instruments including the Integrated Palliative Outcome Scale, Views on Care, Zarit Burden Interview, Phase of Illness, Goal Attainment Scaling, Eastern Cooperative Oncology Group Performance Status, Consumer Quality Indices Palliative Care and Sense of Security in Care. During the main study phase, we will use a mixed-methods approach to evaluate the instruments' psychometric properties (reliability, validity, feasibility and practicability), to identify barriers, facilitators and limitations of their routine use and to explore how their use affects the care within the SOPC setting.
At the end of this study, an outcome- and patient-centered, validated measurement approach should be provided, adapted for standardized evaluations in SOPC across patient groups, palliative care services and regions nationwide. The standardized application of instruments should allow for making valid statements and comparisons of health care quality in SOPC based on process- and outcome-evaluation rather than relying on structural data only. Moreover, the instruments might directly influence the care of patients in palliative situations.
German Clinical Trials Register (DRKS-ID: DRKS00012421 ).
在德国，患有生命末期疾病的患者有资格接受专门的门诊姑息治疗（SOPC）。目前，对这种服务质量的评估缺乏患者相关结果的综合评估。在 SOPC 的特殊情况下，也没有科学共识如何充分证明护理质量。现有的质量报告主要基于描述性结构数据，这些数据无法估计过程质量或结果质量。ELSAH 研究（“评估德国黑森州的专门门诊姑息治疗”）旨在选择-或者，如果有必要，采用-评估和实施一整套措施，以评估、评估和监测专门的、家庭为基础的姑息治疗的质量。
德国黑森州所有提供 SOPC 服务的 22 个 SOPC 团队都参与了 ELSAH 研究。该研究分为两个阶段：准备阶段和主要研究阶段。基于准备阶段的发现，我们选择了一组初步的工具，包括综合姑息治疗结果量表、护理观、Zarit 负担访谈、疾病阶段、目标实现量表、东部合作肿瘤组表现状态、消费者质量指数姑息护理和护理安全感。在主要研究阶段，我们将采用混合方法评估工具的心理测量学特性（可靠性、有效性、可行性和实用性），确定其常规使用的障碍、促进因素和限制因素，并探讨其使用如何影响 SOPC 环境中的护理。
在这项研究结束时，应提供一种以结果和患者为中心、经过验证的测量方法，以适应全国 SOPC 中针对不同患者群体、姑息治疗服务和地区的标准化评估。标准化应用工具应能够根据过程和结果评估而不是仅依赖结构数据，对 SOPC 中的医疗保健质量做出有效陈述和比较。此外，这些工具可能会直接影响处于姑息治疗状态的患者的护理。
德国临床试验注册处（DRKS-ID：DRKS00012421）。
