Deficits and improvement potential of psychosocial and palliative care for people suffering from ALS in Germany

Recruiting

• Conditions: G12.2; Motor neuron disease

• Registration Number: DRKS00028171
• Lead Sponsor: Technische Universität Dresden, Abteilung Neurologie

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2022-06-22
• Last Update Posted: 19 August 2024

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 500

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

- 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

Study & Design

• Study Type: observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
subjective satisfaction with the palliative including psychosocial care of ALS patients in Germany

Secondary Outcome Measures

Name	Time	Method
anxiety/depression,<br>quality of life,<br>attitudes towards life-prolonging measures and physician-assisted suicide,<br>caregiver burden,<br>frequency of involvement of non-medical actors (case management, psychologist, social worker) and specialized palliative care providers in ALS care<br>- connection of these parameters with satisfaction with care