Patients' and Caregivers' Views of Multidimensional Care in Amyotropic Lateral Sclerosis in Germany

Status: Recruiting
Location: See location...
Study Type: Observational
SUMMARY

The progressive loss of physical functioning resulting from ALS leads also to high psychosocial burden for those affected, and organizational challenges related to medical care and aids. A multidimensional and -professional care is advised in order to meet the complex requirements of this disease. In Germany, medical care structures may not fulfil these high requirements, since non-medical services such as psychological support or social counselling are not regularly included in care procedures for ALS patients. Specialised palliative care is not a standard and still commonly restricted to the last weeks of life. Additionally, it is well known that caregivers of ALS patients are highly burdened, but there is a lack of support services for them. By means of a cross-sectional, multicentre survey, we aim to investigate patients' and caregivers' perception of medical care for ALS, provided in Germany - with particular regard to psychosocial and palliative aspects. The extent to which physical, psychological, social, spiritual, practical and informational needs are subjectively met will be assessed and correlations with mental wellbeing, subjective quality of life, attitudes towards life-sustaining measures and physician-assisted suicide, as well as caregiver burden will be examined. Currently, study planning (questionnaires and ethical approval) is already completed and recruitment was started. The study aims to recruit 500 participants from nationwide ALS-centres. Cooperating ALS-centres will be recruited via the German Network for Motoneuron Diseases (MND-Net), of which our centre is a member. It is intended to provide data-based starting points on how care of ALS patients and their caregivers can be improved in Germany, in line with their needs.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: f
View:

• patients with at least possible ALS according to El-Escorial-criteria

• at least 18 years old

• no impairments of behaviour or mental performance relevant to everyday life that limits the ability to make judgments or give consent (e.g. as part of a comorbid FTD)

Locations
Other Locations
Germany
University Hospital Carl Gustav Carus at Technische Universität Dresden
RECRUITING
Dresden
Contact Information
Primary
Katharina Linse, Dr.
katharina.linse@ukdd.de
004935145819792
Backup
René Günther, PD Dr.
rene.guenther@ukdd.de
00493514582532
Time Frame
Start Date: 2022-08-01
Estimated Completion Date: 2025-06-30
Participants
Target number of participants: 500
Sponsors
Leads: Technische Universität Dresden
Collaborators: German Society of Muscle Diseases, ALS Association

This content was sourced from clinicaltrials.gov