Background
Introduction
Motive
What is a shared medical appointment?
Methods/design
Study population
-
Myotonic Dystrophy type 1 genetically determined (classic and juvenile type) [16];
-
McArdles disease, Glycogen Storage Disease Type V. Biochemically and genetically determined;
-
Facioscapulohumeral Muscular Dystrophy (FSHD), genetically determined;
-
Chronic progressive external ophthalmoplegia (CPEO) as defined by Emery [17];
-
Oculopharyngeal Muscular Dystrophy (OPMD), genetically determined;
-
Non-dystrophic myotonias. These skeletal muscle channelopathies include two main groups: the chloride and sodium channelopathies [20];
-
Myositis: Dermatomyositis and Polymyositis [21]
-
Polyneuropathy: CMT1 and HNPP [22]
Inclusion criteria | |
---|---|
1. | Registered in CRAMP database with one of the following neuromuscular diseases |
➢ Myotonic Dystrophy type 1. genetically proven (classic and juvenile type) | |
➢ McArdles disease, Glycogen Storage Disease Type V. Biochemically and genetically proven | |
➢ Facioscapulohumeral Muscular Dystrophy (FSHD). genetically determined | |
➢ Chronic progressive external ophthalmoplegia (CPEO) as defined by Emery | |
➢ Oculopharyngeal Muscular Dystrophy (OPMD). genetically determined | |
➢ Inclusion body myositis (IBM)as defined by Badrising and Verschuuren. | |
➢ Non-dystrophic myotonias. These skeletal muscle channelopathies include two main groups: the chloride and sodium channelopathies. | |
➢ Myositis: Dermatomyositis and Polymyositis | |
➢ Polyneuropathy: CMT1 & HNPP | |
2. | Age > 18 years |
3. | Patients and their partners are control patients in care at the department of neurology RUNMC |
Exclusion criteria
| |
1. | Patients or partners with severe hearing problems |
2. | Patients or partners who cannot speak, read or understand the Dutch language well |
3. | Patients and their partner who have had a control visit with a neurologist at the neurology department of the RUNMC less than 6 months ago |
Ethical approval and registration
Randomization and blinding
Interventions
Compliance and attrition
Outcomes
Instruments | T0 | T1 | T2 | T3 | |
---|---|---|---|---|---|
Primary outcome measures | |||||
Quality of life | EQ5D, SF36, INQOL | √ | √ | √ | √ |
Secondary outcome measures
| |||||
Demographic statistics | √ | ||||
Severity of the disease | Rankin Scale | √ | |||
Use of care resources and medicine | Client Service Receipt Inventory (CSRI) | √ | √ | √ | |
Self efficacy | SE questionnaire from Schwarzer, SE NMD | √ | √ | √ | √ |
Social support | SSLD (Sociale Steun Lijst-Discrepanties) | √ | √ | √ | √ |
Satisfaction with relationship | √ | √ | √ | √ | |
Satisfaction with the appointment | QUality Of care Through the patient's Eyes (QUOTE) | √ | √ | √ |
Instruments | T0 | T1 | T2 | T3 | |
---|---|---|---|---|---|
Primary outcome measures | |||||
Quality of life | EQ5D | √ | √ | √ | √ |
Secondary outcome measures
| |||||
Demographic statistics | √ | ||||
Self efficacy | SE questionnaire from Schwarzer | √ | √ | √ | √ |
Social support | SSLD (Sociale Steun Lijst-Discrepanties) | √ | √ | √ | √ |
Satisfaction with relationship | √ | √ | √ | √ | |
Satisfaction with the appointment | QUality Of care Through the patient's Eyes (QUOTE) | √ | √ | √ |
Economic evaluation
Statistical analysis
Sample size
Analysis of outcome measures
Economic evaluation
Discussion
Appendix 1
-
Patient registers at the outpatient clinic an led to the group visit room by the group mentor
-
Patients are being asked to fill out a privacy form
-
Group mentor starts with a brief introduction, in which the process of an SMA and privacy aspects are explained
-
Neurologist starts with consulting the first patient
-
Individual medical needs and questions of the patient are being discussed with the neurologist
-
The neurologist gives information to the patient and his/her partner
-
If applicable, the group mentor asks if fellow patients have experiences on this subject they want to share or questions they want to ask to fellow patients or the neurologist
-
Neurologist finishes consultation with the first patient and writes notes in the patient record
-
The neurologist lifts the second patient record and starts with consulting the second patient, and so on till all patients have had their consultation
-
The group mentor asks if all questions are answered and if so closes the group visit
-
If applicable, physical examination of a patient is being executed by the neurologist in a separate room, any necessary receipts or blood samples are being taken care of as well
-
Group mentor and neurologist leave the group visit room and fill out patient records and patient letters