Group medical appointments for neuromuscular patients

To compare group medical appointments (shared medical appointments or group visits) with conventional one to one appointments for patients with a chronic neuromuscular disease in terms of health outcome (quality of life) and costs

Status

Active, not recruiting

Phases

Unknown

Study type

Interventional

Source

NL-OMON

Registry ID

NL-OMON28911

Enrollment

270

Registered

2008-08-18

Start date

2008-07-01

Completion date

Unknown

Last updated

2024-02-28

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

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

Interventions

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

Eligibility

Inclusion criteria

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

Exclusion criteria: 1. Hearing impairment 2. Not able to communicate well in Dutch language

Design outcomes

Primary

Measure	Time frame
- Quality of life	—

Secondary

Measure	Time frame
- self-efficacy - patient- and partner satisfaction with care - functional activities - service utilization - costs	—

Contacts

Public ContactFemke Seesing

Postlaan 4

f.seesing@cbo.nl+31 (0)24 3614559 / +31 (0)30 2845705

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)