Care for capabilities: Implementing the capability approach in rehabilitation of patients with neuromuscular diseases. Study protocol of the controlled before-after ReCap-NMD study.
Journal
PloS one
ISSN: 1932-6203
Titre abrégé: PLoS One
Pays: United States
ID NLM: 101285081
Informations de publication
Date de publication:
2021
2021
Historique:
received:
11
11
2021
accepted:
16
11
2021
entrez:
21
12
2021
pubmed:
22
12
2021
medline:
12
1
2022
Statut:
epublish
Résumé
High quality care of patients with neuromuscular diseases requires a personalised approach that focuses on achieving and maintaining a level of functioning that enables them to be in a state of well-being. The capability approach states that well-being should be understood in terms of capabilities, the substantial opportunities that people have to be and do things they have reasons to value. In this Rehabilitation and Capability care for patients with Neuromuscular diseases (ReCap-NMD) 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 neuromuscular diseases (NMD). Two groups of 30 adult patients with facioscapulohumeral muscular dystrophy or myotonic dystrophy type 1 will be included. The first group will receive rehabilitation care as usual with a follow-up period of 6 months. Then, based on theory, and experiences of patients and healthcare professionals, capability care will be developed. During the following 3 months, the multidisciplinary outpatient rehabilitation care team will be trained in providing this newly developed capability care. Subsequently, the second group will receive capability care, with a follow-up period of 6 months. A mixed methods approach is used with both qualitative and quantitative outcome measures to evaluate the effect of capability care and to perform a process evaluation. The primary outcome measure will be the Canadian Occupational Performance Measure. The ReCap-NMD study is the first study to design and implement a healthcare intervention based on the capability approach. The results of this study will expand our knowledge on how the capability approach can be applied in delivering and evaluating healthcare, and will show whether implementing such an intervention leads to a higher well-being for patients with NMD. Registered at Trialregister.nl (Trial NL8946) on 12th of October, 2020.
Sections du résumé
BACKGROUND
High quality care of patients with neuromuscular diseases requires a personalised approach that focuses on achieving and maintaining a level of functioning that enables them to be in a state of well-being. The capability approach states that well-being should be understood in terms of capabilities, the substantial opportunities that people have to be and do things they have reasons to value. In this Rehabilitation and Capability care for patients with Neuromuscular diseases (ReCap-NMD) 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 neuromuscular diseases (NMD).
METHODS
Two groups of 30 adult patients with facioscapulohumeral muscular dystrophy or myotonic dystrophy type 1 will be included. The first group will receive rehabilitation care as usual with a follow-up period of 6 months. Then, based on theory, and experiences of patients and healthcare professionals, capability care will be developed. During the following 3 months, the multidisciplinary outpatient rehabilitation care team will be trained in providing this newly developed capability care. Subsequently, the second group will receive capability care, with a follow-up period of 6 months. A mixed methods approach is used with both qualitative and quantitative outcome measures to evaluate the effect of capability care and to perform a process evaluation. The primary outcome measure will be the Canadian Occupational Performance Measure.
DISCUSSION
The ReCap-NMD study is the first study to design and implement a healthcare intervention based on the capability approach. The results of this study will expand our knowledge on how the capability approach can be applied in delivering and evaluating healthcare, and will show whether implementing such an intervention leads to a higher well-being for patients with NMD.
TRIAL REGISTRATION
Registered at Trialregister.nl (Trial NL8946) on 12th of October, 2020.
Identifiants
pubmed: 34932590
doi: 10.1371/journal.pone.0261475
pii: PONE-D-21-32625
pmc: PMC8691629
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
e0261475Déclaration de conflit d'intérêts
The authors have declared that no competing interests exist.
Références
Neurology. 2014 Sep 16;83(12):1056-9
pubmed: 25122204
Lancet Neurol. 2014 Jun;13(6):557-66
pubmed: 24726066
Disabil Rehabil. 2012;34(6):478-85
pubmed: 21978031
Scand J Work Environ Health. 2016 Jan;42(1):34-42
pubmed: 26618990
BMJ. 2015 Mar 19;350:h1258
pubmed: 25791983
Clin Rehabil. 2005 Dec;19(8):888-94
pubmed: 16323388
J Rehabil Res Dev. 2011;48(5):517-28
pubmed: 21674402
Clin Rehabil. 2004 Sep;18(6):660-7
pubmed: 15473118
J Neurol. 2010 Sep;257(9):1473-81
pubmed: 20383521
Can J Occup Ther. 1990 Apr;57(2):82-7
pubmed: 10104738
J Occup Rehabil. 2014 Mar;24(1):42-51
pubmed: 23624979
Disabil Rehabil. 2017 Jun;39(13):1262-1270
pubmed: 27342814
Disabil Rehabil. 2018 Mar;40(5):603-611
pubmed: 28129712
Patient. 2019 Aug;12(4):365-373
pubmed: 30714084
Neurology. 2019 Oct 29;93(18):e1720-e1731
pubmed: 31570565
J Clin Epidemiol. 2007 Dec;60(12):1234-8
pubmed: 17998077
Clin Rehabil. 2003 Jul;17(4):402-9
pubmed: 12785249
Qual Life Res. 2012 Feb;21(1):167-76
pubmed: 21598064
J Rehabil Med. 2015 May;47(5):445-53
pubmed: 25679115
Disabil Rehabil. 2021 Jul;43(14):1989-1994
pubmed: 31724886
J Clin Epidemiol. 1998 Nov;51(11):1055-68
pubmed: 9817123
Soc Indic Res. 2017;133(1):345-371
pubmed: 28769147
Qual Life Res. 2011 Dec;20(10):1727-36
pubmed: 21479777
Qual Life Res. 2015 Oct;24(10):2319-31
pubmed: 25894061
Can J Occup Ther. 2004 Oct;71(4):210-22
pubmed: 15586853
Trials. 2015 May 23;16:224
pubmed: 26002596