Patients' and caregivers' perception of multidimensional and palliative care in amyotrophic lateral sclerosis - protocol of a German multicentre study.
Katharina Linse, Constanze Weber, Peter Reilich, Florian Schöberl, Matthias Boentert, Susanne Petri, Annekathrin Rödiger, Andreas Posa, Markus Otto, Joachim Wolf, Daniel Zeller, Robert Brunkhorst, Jan Koch, Andreas Hermann, Julian Großkreutz, Carsten Schröter, Martin Groß, Paul Lingor, Gerrit Machetanz, Luisa Semmler, Johannes Dorst, Dorothée Lulé, Albert Ludolph, Thomas Meyer, André Maier, Moritz Metelmann, Martin Regensburger, Jürgen Winkler, Berthold Schrank, Zacharias Kohl, Tim Hagenacker, Svenja Brakemeier, Ute Weyen, Markus Weiler, Stefan Lorenzl, Sarah Bublitz, Patrick Weydt, Torsten Grehl, Sylvia Kotterba, Hanna-Sophie Lapp, Maren Freigang, Maximilian Vidovic, Elisa Aust, René Günther
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引用次数: 0
Abstract
Introduction: Amyotrophic lateral sclerosis (ALS) is an inevitably fatal condition that leads to a progressive loss of physical functioning, which results in a high psychosocial burden and organizational challenges related to medical care. Multidimensional and multiprofessional care is advised to meet the complex needs of patients and their families. Many healthcare systems, including Germany, may not be able to meet these needs because non-medical services such as psychological support or social counselling are not regularly included in the care of patients with ALS (pwALS). Specialised neuropalliative care is not routinely implemented nor widely available. Caregivers of pwALS are also highly burdened, but there is still a lack of support services for them.
Methods: This project aims to assess the perceptions and satisfaction with ALS care in Germany in pwALS and their caregivers. This will be achieved by means of a cross-sectional, multicentre survey. The examination will assess, to which extend the patients' needs in the six domains of physical, psychological, social, spiritual, practical and informational are being met by current care structures. This assessment will be linked to mental well-being, subjective quality of life, attitudes toward life-sustaining measures and physician-assisted suicide, and caregiver burden. The study aims to recruit 500 participants from nationwide ALS centres in order to draw comprehensive conclusions for Germany. A total of 29 centres, mostly acquired via the clinical and scientific German Network for Motor Neuron Diseases (MND-NET), will take part in the project, 25 of which have already started recruitment.
Perspective: It is intended to provide data-based starting points on how current practice of care in Germany is perceived pwALS and their caregivers and how it can be improved according to their needs. Planning and initiation of the study has been completed.
Trial registration: The study is registered at ClinicalTrails.gov; NCT06418646.
导言：肌萎缩性脊髓侧索硬化症（ALS）是一种不可避免的致命疾病，会导致患者逐渐丧失身体机能，造成沉重的社会心理负担和与医疗相关的组织挑战。为满足患者及其家属的复杂需求，建议采用多维度、多专业的护理方式。包括德国在内的许多医疗保健系统可能无法满足这些需求，因为心理支持或社会咨询等非医疗服务并未定期纳入 ALS 患者（pwALS）的护理中。专业的神经姑息治疗既没有常规实施，也没有广泛普及。ALS患者的照顾者也承受着沉重的负担，但目前仍缺乏针对他们的支持服务：本项目旨在评估德国患者及其护理人员对 ALS 护理的看法和满意度。这将通过一项横断面多中心调查来实现。调查将评估目前的护理机构在多大程度上满足了患者在生理、心理、社交、精神、实践和信息等六个方面的需求。这项评估将与精神健康、主观生活质量、对维持生命措施和医生协助自杀的态度以及护理人员的负担联系起来。该研究旨在从全国 ALS 中心招募 500 名参与者，以便为德国得出全面的结论。共有29个中心将参与该项目，其中25个中心已经开始招募：该项目旨在提供基于数据的出发点，以了解德国当前的护理实践是如何被运动神经元疾病患者及其护理人员所接受的，以及如何根据他们的需求加以改进。研究的规划和启动工作已经完成：该研究已在 ClinicalTrails.gov 注册；NCT06418646。
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