No registrations found.
ID
Source
Brief title
Health condition
The following specific chronic neuromuscular diseases are selected:
1. Myotonic dystrophy = myotone dystrofie 2. facioscapulohumeral dystrophy,
3. chronic progressive external
ophthalmoplegia,
4. oculopharyngeal muscular dystrophy,
5. inclusion body myositis,
6. McArdles'disease
Sponsors and support
Intervention
Outcome measures
Primary outcome
- Quality of life
Secondary outcome
- self-efficacy
- patient- and partner satisfaction with care
- functional activities
- service utilization
- costs
Background summary
To compare group medical appointments (group visits) with conventional one to one appointments for patients with a chronic neuromuscular disease in terms of quality of life, self efficacy, satisfaction, use of care and costs. Group medical appointments are 2-hour physician appointments in the company of other patients with the same neuromuscular disease.
Study objective
Patients who attend a shared medical appointment will have better self efficacy, are more satisfied with their care and have a better quality of life than patients who attend the usual one on one outpatient appointment with their docter. Costs maybe lower because of the higher volume of patients that can be seen during a shared medical appointment.
Study design
baseline, 1,3 and 6 months
Intervention
Intervention group:
Group medical appointment during a 2 hour session at the outpatient clinic of the department of
neurology
Control group:
usual care (one on one visit at the outpatient clinic of the department of neurology)
Femke Seesing
Nijmegen 6525 GC
The Netherlands
+31 (0)24 3614559 / +31 (0)30 2845705
f.seesing@cbo.nl
Femke Seesing
Nijmegen 6525 GC
The Netherlands
+31 (0)24 3614559 / +31 (0)30 2845705
f.seesing@cbo.nl
Inclusion criteria
Follow up patients > 18 year, with the following specific chronic neuromuscular diseases are selected:
1. Myotonic dystrophy = myotone dystrofie
2. Facioscapulohumeral muscular dystrophy (FSHD)
3. Chronic progressive external ophthalmoplegia (CPEO)
4. Oculopharyngeal muscular dystrophy (OPMD)
5. Inclusion body myositis (IBM)
6. McArdles' disease
7. Myositis: Dermamyositis and Polymyositis
8. Polyneuropathy: CMT1(a) & HMSN1
9. Non-dystrophic myotonias: chloride and sodium channelopathies.
Exclusion criteria
1. Hearing impairment
2. Not able to communicate well in Dutch language
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 | NL1352 |
| NTR-old | NTR1412 |
| Other | CMO : 026550 |
| ISRCTN | ISRCTN wordt niet meer aangevraagd |