fascioscapulohumeral dystrophy (FSHD) and myotonic dystrophy type 1 (DM1)
Conditions
Interventions
One group of patients will receive usual rehabilitation care. The other group
of patients will receive care based on the capability approach (capability
care). Health care professionals will be trai
Sponsors
Radboud Universitair Medisch Centrum
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: - confirmed diagnosis of FSHD or DM1 by neurologist - 18 years or older - a current rehabilitation aim - in a mentally stable condition - sufficient mastery of the Dutch language to participate in conversation with the health care providers and research assistant and to fill in questionnaires - informed consent (written) Patients that have been treated previously and have new rehabilitation aims can be included.
Exclusion criteria
Exclusion criteria: - patients that have one of the following comorbidities: o active or previously major psychotic, psychiatric or depression episodes o acquired brain injury (e.g. stroke, traumatic brain injury) o severe cognitive problems (e.g. severe dementia) in which case the rehabilitation treatment is affected and/or patients are not able to fill out the questionnaires o a limited life expectancy (e.g. due to cancer)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Difference in the Canadian Occupational Performance Measure (COPM) between both groups (corrected for the value at baseline). | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary outcomes: Difference between both groups in the the ICEpop CAPability measure for Adults (ICECAP-A), Utrecht Scale for Evaluation of Rehabilitation Participation (USER-P), the EuroQol-5D-5L (EQ-5D-5L), the Medical Outcome Study Short-Form-36 (SF-36) and the Capability Set for Work Questionnaire (CSWQ) score. Other study parameters: Audio recordings of consultations with the healthcare professionals and the multidisciplinary team meetings, medical reports, questionnaire on resources and personal characteristics, interviews with patients and partners, focus groups with healthcare professionals. | — |
Countries
Netherlands
Outcome results
None listed