肌萎缩侧索硬化症患者及照护者对多维姑息治疗的认知——一项德国多中心研究方案

Patients' and caregivers' perception of multidimensional and palliative care in amyotrophic lateral sclerosis - protocol of a German multicentre study.

作者信息

Linse Katharina, Weber Constanze, Reilich Peter, Schöberl Florian, Boentert Matthias, Petri Susanne, Rödiger Annekathrin, Posa Andreas, Otto Markus, Wolf Joachim, Zeller Daniel, Brunkhorst Robert, Koch Jan, Hermann Andreas, Großkreutz Julian, Schröter Carsten, Groß Martin, Lingor Paul, Machetanz Gerrit, Semmler Luisa, Dorst Johannes, Lulé Dorothée, Ludolph Albert, Meyer Thomas, Maier André, Metelmann Moritz, Regensburger Martin, Winkler Jürgen, Schrank Berthold, Kohl Zacharias, Hagenacker Tim, Brakemeier Svenja, Weyen Ute, Weiler Markus, Lorenzl Stefan, Bublitz Sarah, Weydt Patrick, Grehl Torsten, Kotterba Sylvia, Lapp Hanna-Sophie, Freigang Maren, Vidovic Maximilian, Aust Elisa, Günther René

机构信息

University Hospital Carl Gustav Carus at Technische Universität Dresden, Fetscherstrasse 74, 01307, Dresden, Germany.

German Center for Neurodegenerative Diseases Dresden, Tatzberg 41, 01307, Dresden, Germany.

出版信息

Neurol Res Pract. 2024 Jul 4;6(1):34. doi: 10.1186/s42466-024-00328-1.

DOI:10.1186/s42466-024-00328-1

PMID:38961496

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11223310/

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.

摘要

引言

肌萎缩侧索硬化症（ALS）是一种不可避免的致命疾病，会导致身体功能逐渐丧失，从而带来沉重的心理社会负担以及与医疗护理相关的组织挑战。建议提供多维度、多专业的护理，以满足患者及其家属的复杂需求。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，因为诸如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。专门的神经姑息治疗并未常规实施，也未广泛提供。pwALS的护理人员负担也很重，但仍缺乏针对他们的支持服务。

方法

本项目旨在评估德国pwALS患者及其护理人员对ALS护理的看法和满意度。这将通过横断面、多中心调查来实现。该调查将评估当前的护理结构在多大程度上满足了患者在身体、心理、社会、精神、实际和信息这六个领域的需求。该评估将与心理健康、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负担相关联。该研究旨在从全国性的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，其中大部分是通过德国运动神经元疾病临床和科学网络（MND-NET）获得的，其中25个中心已经开始招募。