Rehabilitation & Capability Care in NMD
- Conditions
- <p>facioscapulohumeral dystrophy (FSHD) and myotonic dystrophy type 1 (DM1)</p>FSHD and DM110028302
- Registration Number
- NL-OMON24397
- Lead Sponsor
- Prinses Beatrix Spierfonds
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Completed
- Sex
- Not specified
- Target Recruitment
- 60
In order to be eligible to participate in this study, a subject must meet all of the following 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.
A potential subject who meets any of the following criteria will be excluded from participation in this study: - 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)
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method <p>Difference in the Canadian Occupational Performance Measure (COPM) between both groups (corrected for the value at baseline).</p><br>
- Secondary Outcome Measures
Name Time Method <p>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.</p><br>