The quality of life of adult patients with NMD can be enhanced by providing capability care in comparison to usual care.
ID
Bron
Verkorte titel
Aandoening
- Spieraandoeningen
Aandoening
facioscapulohumeral dystrophy (FSHD) and myotonic dystrophy type 1 (DM1)
Betreft onderzoek met
Ondersteuning
Onderzoeksproduct en/of interventie
- Overige
Uitkomstmaten
Primaire uitkomstmaten
Difference in the Canadian Occupational Performance Measure (COPM) between both groups (corrected for the value at baseline).
Achtergrond van het onderzoek
High quality care of patients with inheritable neuromuscular diseases (NMD) requires a multi-faceted personalized approach. The capability approach provides a new conceptualization of wellbeing focusing on a) the real opportunities that patients have to be and do things they have reason to value and b) the dynamic interaction between access to resources (e.g., medication, aids), personal characteristics, physical and social environment, and such opportunities. In this study we want to investigate whether providing care based on the capability approach (capability care) has an added value in the rehabilitation of patients with NMD.
Doel van het onderzoek
The quality of life of adult patients with NMD can be enhanced by providing capability care in comparison to usual care.
Onderzoeksopzet
T0: baseline, just before intervention. T1: 6 months after T0
Onderzoeksproduct en/of interventie
Publiek
Wetenschappelijk
Leeftijd
Belangrijkste voorwaarden om deel te mogen nemen (Inclusiecriteria)
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.
Belangrijkste redenen om niet deel te kunnen nemen (Exclusiecriteria)
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)
Opzet
Deelname
Voornemen beschikbaar stellen Individuele Patiënten Data (IPD)
p/a Radboudumc, huispost 628,
Postbus 9101
6500 HB Nijmegen
024 361 3154
commissiemensgebondenonderzoek@radboudumc.nl
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In overige registers
| Register | ID |
|---|---|
| NTR-new | NL8946 |
| CCMO | NL72794.091.20 |
| OMON | NL-OMON49384 |