No registrations found.
ID
Source
Brief title
Health condition
Amyotrophic Lateral Sclerosis, ALS
Sponsors and support
Intervention
Outcome measures
Primary outcome
Quality of life (ALSAQ-40)
Secondary outcome
Patient:
- ALS specific symptomatology (e.g. fatigue, stiffness/spasticity, pain, breathing difficulty, cramps, sialorrhia: ordinal scale score)
- Delivery time of aids and adaptations (recording time procedure request-delivery).
- Actualisation of a PEG catheter and a meeting at the CTB (recording of the duration of the procedure issue-actualisation).
- Restrictions in activities (ALSFRS-R)
- Restrictions in autonomy and participation (IPA)
Caregiver:
- Caregiver burden (CSI).
Patient and caregiver:
- Quality of care (Quality of care questionnaire MITTZ)
- Depression and Anxiety (HADS)
Background summary
Previous research has shown that the quality of care for patients with ALS is insufficient, especially the collaboration of the various disciplines, timely delivery of the necessary aids and adaptations, the high frequency of unsatisfactorily treated, but well treatable symptoms and that the caregivers’ total burden is high.
Case management appears to be the organisational solution. The case manager may provide a better symptom control since the coordinating and steering function leads to early interventions and early solutions to problems. In a randomized controlled trial the effectiveness of case management during 1 year on the quality of life of ALS-patients and the caregiver burden will be investigated.
Study objective
Case-management in ALS improves quality of life of ALS-patients and reduces the caregiver burden.
Study design
baseline (T0)
4 months (T1)
8 months (T2)
12 months (T3)
Intervention
For 1 year a case manager maintains contact with ALS patients and their informal caregiver through home visits, telephone calls and e-mail designed to provide information regarding symptoms, aids and adaptations and interventions, to control disease symptoms, and to coordinate care with the person's specialized ALS care teams.
Nieuwe Achtergracht 127
Kamer D9.19
Amsterdam 1018 WS
The Netherlands
+31 (0)20 525 1451
H.E.Creemers@UvA.nl
Nieuwe Achtergracht 127
Kamer D9.19
Amsterdam 1018 WS
The Netherlands
+31 (0)20 525 1451
H.E.Creemers@UvA.nl
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).
3. Residence in a hospice/terminal care unit.
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| NTR-new | NL1225 |
| NTR-old | NTR1270 |
| Other | MEC AMC : 08/083 |
| ISRCTN | ISRCTN wordt niet meer aangevraagd |