Ignite Creation Date:
2024-05-19 @ 5:33 PM
Last Modification Date:
2024-10-26 @ 3:29 PM
Study NCT ID:
NCT06418646
Status:
RECRUITING
Last Update Posted:
2024-05-17
First Post:
2024-05-08
Brief Title:
Patients and Caregivers Views of Multidimensional Care in Amyotropic Lateral Sclerosis in Germany
Sponsor:
Technische Universität Dresden
Organization:
Technische Universität Dresden
Study Overview
Official Title:
Patients and Caregivers Views of Multidimensional Care in Amyotropic Lateral Sclerosis in Germany
Status:
RECRUITING
Status Verified Date:
2024-05
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief 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
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
Detailed Description:
None
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None