*Capability care: what matters most to patients with neuromuscular diseases?*
- Conditions
- fascioscapulohumeral dystrophy (FSHD) and myotonic dystrophy type 1 (DM1)10029317
- Registration Number
- NL-OMON49384
- Lead Sponsor
- Radboud Universitair Medisch Centrum
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- Not specified
- Target Recruitment
- 60
- 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.
- 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<br /><br>groups (corrected for the value at baseline).</p><br>
- Secondary Outcome Measures
Name Time Method <p>Secondary outcomes:<br /><br>Difference between both groups in the the ICEpop CAPability measure for Adults<br /><br>(ICECAP-A), Utrecht Scale for Evaluation of Rehabilitation Participation<br /><br>(USER-P), the EuroQol-5D-5L (EQ-5D-5L), the Medical Outcome Study Short-Form-36<br /><br>(SF-36) and the Capability Set for Work Questionnaire (CSWQ) score.<br /><br><br /><br>Other study parameters:<br /><br>Audio recordings of consultations with the healthcare professionals and the<br /><br>multidisciplinary team meetings, medical reports, questionnaire on resources<br /><br>and personal characteristics, interviews with patients and partners, focus<br /><br>groups with healthcare professionals.</p><br>