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

patients' satisfaction with professional care

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.