Case management in patients with Amyotrophic Lateral Sclerosis and their caregivers
Recruiting
- Conditions
- Amyotrophic Lateral Sclerosis, ALS
- Registration Number
- NL-OMON21038
- Lead Sponsor
- etherlands ALS Centre Amsterdam, Utrecht, and Nijmegen
- Brief Summary
/A
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- Not specified
- Target Recruitment
- 195
Inclusion Criteria
1. Diagnosed as clinically definite, clinically probable, clinically probable lab-supported or clinically possible Amyotrophic Lateral Scelerosis according to the El Escorial criteria.
2. Age > 18 years.
Exclusion Criteria
1. Insufficient proficiency in the Dutch language.
2. Cognitive impairment (diagnosed through the cognitive screening test: Mini Mental State Examination < 20).
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Quality of life (ALSAQ-40)
- Secondary Outcome Measures
Name Time Method Patient: <br /><br>- ALS specific symptomatology (e.g. fatigue, stiffness/spasticity, pain, breathing difficulty, cramps, sialorrhia: ordinal scale score)<br /><br>- Delivery time of aids and adaptations (recording time procedure request-delivery). <br /><br>- Actualisation of a PEG catheter and a meeting at the CTB (recording of the duration of the procedure issue-actualisation). <br /><br>- Restrictions in activities (ALSFRS-R)<br /><br>- Restrictions in autonomy and participation (IPA)<br /><br><br /><br>Caregiver: <br /><br>- Caregiver burden (CSI). <br /><br><br /><br>Patient and caregiver: <br /><br>- Quality of care (Quality of care questionnaire MITTZ)<br /><br>- Depression and Anxiety (HADS)<br /><br>