G12.2
Conditions
Interventions
Sponsors
Technische Universität Dresden, Abteilung Neurologie
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: - ALS diagnosis (at least "possible" according to El Escorial criteria; including its subtypes, but excluding primary lateral sclerosis (PLS); all disease stages); or close relatives of an ALS patient - = 18 years old - Ability to give consent, oral and written personal or representative consent to study participation
Exclusion criteria
Exclusion criteria: - Impairments of behavior or mental performance relevant to everyday life (mainly in the context of comorbid frontotemporal dementia), which clearly limit the ability to make judgments or make it impossible to fill out the questionnaires - Other serious acute psychiatric diagnosis or higher brain function disorder that impairs judgment (e.g. schizophrenia, delirium) - Inability to give consent
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| subjective satisfaction with the palliative including psychosocial care of ALS patients in Germany | — |
Secondary
| Measure | Time frame |
|---|---|
| anxiety/depression, quality of life, attitudes towards life-prolonging measures and physician-assisted suicide, caregiver burden, frequency of involvement of non-medical actors (case management, psychologist, social worker) and specialized palliative care providers in ALS care - connection of these parameters with satisfaction with care | — |
Countries
Germany
Contacts
Public ContactRené Günther
Technische Universität Dresden, Abteilung Neurologie
Outcome results
None listed