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…
ID
Bron
Verkorte titel
Aandoening
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
Ondersteuning
Onderzoeksproduct en/of interventie
Uitkomstmaten
Primaire uitkomstmaten
- Quality of life
Achtergrond van het onderzoek
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.
Doel van het onderzoek
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.
Onderzoeksopzet
baseline, 1,3 and 6 months
Onderzoeksproduct en/of interventie
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)
Publiek
Femke Seesing
Nijmegen 6525 GC
The Netherlands
+31 (0)24 3614559 / +31 (0)30 2845705
f.seesing@cbo.nl
Wetenschappelijk
Femke Seesing
Nijmegen 6525 GC
The Netherlands
+31 (0)24 3614559 / +31 (0)30 2845705
f.seesing@cbo.nl
Belangrijkste voorwaarden om deel te mogen nemen (Inclusiecriteria)
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.
Belangrijkste redenen om niet deel te kunnen nemen (Exclusiecriteria)
1. Hearing impairment
2. Not able to communicate well in Dutch language
Opzet
Deelname
Opgevolgd door onderstaande (mogelijk meer actuele) registratie
Geen registraties gevonden.
Andere (mogelijk minder actuele) registraties in dit register
Geen registraties gevonden.
In overige registers
| Register | ID |
|---|---|
| NTR-new | NL1352 |
| NTR-old | NTR1412 |
| Ander register | CMO : 026550 |
| ISRCTN | ISRCTN wordt niet meer aangevraagd |