G12.2
Conditions
Interventions
Group 1: Patients with ALS will receive an online questionnaire which consists of questions about their technology readiness level, technology use and physical functional ability (quantitative part).
Sponsors
Charité, Ambulanz für ALS und andere Motoneuronenerkrankungen
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: Patients: aged 18 and above, clinical diagnosis of ALS (according to El Escorial criteria). Informal caregivers: aged 18 and above; persons closely related to the patient, who belong to his or her family or extended environment and substatially involved in the patient care. Formal caregivers: professionally trained caregiver or caregiver assistant, experienced in ALS patient care.
Exclusion criteria
Exclusion criteria: Patients: lack of written consent, lack of willingness to save and transfer pseudomynized health data, incapacitated people due to cognitive deficits (at least a medium-level collateral dementia), lack of written consent of the legal representative (if existent). Informal caregivers: lack of written consent, presence of a heritable psychological stress disorder which makes an additional burden due to the interviews inacceptable. Formal caregivers: lack of written consent.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Questionnaire (ALS-patients): technology readiness level (Neyer, Felber, & Geb-hardt, 2012), functional ability of ALS-patients (ALSFRS-EX, Abdulla u. a., 2013), caregiver stress (Zarit Burden Interview, Zarit, Reever, & Bach-Peterson, 1980). | — |
Secondary
| Measure | Time frame |
|---|---|
| Questionnaire (ALS-patients): self-developed questionnaire about the usage of technical equipment and about the prioritisation of specific functions of a newly developed robot-supported assistive system. Interviews (ALS-patients, formal and informal caregivers): self-developed interview guidelines about the acceptance of and experience with technical assistive systems and the requirements to a newly developed robot-supported assistive system. | — |
Countries
Germany
Contacts
Public ContactAndré Maier
Charité, Ambulanz für ALS und andere Motoneuronenerkrankungen
Outcome results
None listed