Department of Psychiatry and Psychotherapy, Technical University of Munich, Ismaninger Str.22, 81675, Munich, Germany.
Münchner Studienzentrum, Technical University of Munich, Munich, Germany.
BMC Psychiatry. 2018 Aug 31;18(1):271. doi: 10.1186/s12888-018-1846-0.
Scientific research on palliative care in dementia is still underdeveloped. In particular, there are no research studies at all on palliative care issues in young onset dementia (YOD), although significant differences compared to late onset dementia (LOD) are expected. Most studies have focused on persons with dementia in long term care (LTC) facilities but have neglected persons that are cared for at home. We hypothesize that unmet care needs exist in advanced and terminal stages of YOD and LOD and that they differ between YOD and LOD.
METHODS/DESIGN: The EPYLOGE-study (IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany) aims to prospectively assess and survey 200 persons with YOD and LOD in advanced stages who are cared for in LTC facilities and at home. Furthermore, EPYLOGE aims to investigate the circumstances of death of 100 persons with YOD and LOD. This includes 1) describing symptoms and management, health care utilization, palliative care provision, quality of life and death, elements of advance care planning, family caregivers' needs and satisfaction; 2) comparing YOD and LOD regarding these factors; 3) developing expert-consensus recommendations derived from the study results for the improvement and implementation of strategies and interventions for palliative care provision; 4) and communicating the recommendations nationally and internationally in order to improve and adapt guidelines, to change current practice and to give a basis and perspectives for future research projects. The results will also be communicated to patients and their families in order to counsel and support them in their decision making processes and their dialogue with professional caregivers and physicians.
EPYLOGE is the first study in Germany that assesses palliative care and end-of-life issues in dementia. Furthermore, it is the first study internationally that focuses on the specific palliative care situation of persons with YOD and their families. EPYLOGE serves as a basis for the improvement of palliative care in dementia.
The study is registered in ClinicalTrials.gov ( NCT03364179 ; Registered: 6. December 2017.
痴呆症的姑息治疗科学研究仍不发达。特别是，在早发性痴呆症（YOD）中，没有关于姑息治疗问题的研究，尽管与晚发性痴呆症（LOD）相比，预计会有明显的差异。大多数研究都集中在长期护理（LTC）机构中的痴呆症患者身上，但忽视了在家中接受护理的患者。我们假设，在 YOD 和 LOD 的晚期和终末期存在未满足的护理需求，并且这些需求在 YOD 和 LOD 之间存在差异。
方法/设计：EPYLOGE 研究（德国早发性和晚发性痴呆症晚期和终末期姑息治疗问题）旨在前瞻性评估和调查 200 名在 LTC 机构和家中接受护理的晚期 YOD 和 LOD 患者。此外，EPYLOGE 旨在调查 100 名 YOD 和 LOD 患者的死亡情况。这包括 1）描述症状和管理、医疗保健利用、姑息治疗提供、生活质量和死亡、预先护理计划要素、家庭照顾者的需求和满意度；2）比较 YOD 和 LOD 在这些因素方面的差异；3）从研究结果中为姑息治疗提供策略和干预措施的改进和实施制定专家共识建议；4）在国家和国际上宣传这些建议，以改善和调整指南，改变当前实践，并为未来的研究项目提供基础和观点。研究结果也将传达给患者及其家属，以便在他们的决策过程中为他们提供咨询和支持，并与专业护理人员和医生进行对话。
EPYLOGE 是德国第一项评估痴呆症姑息治疗和临终问题的研究。此外，它是国际上第一项关注 YOD 患者及其家属特定姑息治疗情况的研究。EPYLOGE 为改善痴呆症姑息治疗提供了基础。
该研究在 ClinicalTrials.gov 注册（NCT03364179；注册日期：2017 年 12 月 6 日）。
