Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP.
cerebral palsy
disability
health
health care
multidisciplinary
pain
Journal
JMIR research protocols
ISSN: 1929-0748
Titre abrégé: JMIR Res Protoc
Pays: Canada
ID NLM: 101599504
Informations de publication
Date de publication:
09 Oct 2019
09 Oct 2019
Historique:
received:
06
03
2019
accepted:
07
07
2019
revised:
10
06
2019
entrez:
11
10
2019
pubmed:
11
10
2019
medline:
11
10
2019
Statut:
epublish
Résumé
Cerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population. The overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP. MOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed. The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained. In this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP. DERR1-10.2196/13883.
Sections du résumé
BACKGROUND
BACKGROUND
Cerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population.
OBJECTIVE
OBJECTIVE
The overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP.
METHODS
METHODS
MOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed.
RESULTS
RESULTS
The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained.
CONCLUSIONS
CONCLUSIONS
In this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID)
UNASSIGNED
DERR1-10.2196/13883.
Identifiants
pubmed: 31599737
pii: v8i10e13883
doi: 10.2196/13883
pmc: PMC6811769
doi:
Types de publication
Journal Article
Langues
eng
Pagination
e13883Informations de copyright
©Ann Alriksson-Schmidt, Johan Jarl, Elisabet Rodby-Bousquet, Annika Lundkvist Josenby, Lena Westbom, Kate Himmelmann, Kristine Stadskleiv, Pia Ödman, Ingrid Svensson, Christian Antfolk, Nebojsa Malesevic, Ira Jeglinsky, Sanjib Saha, Gunnar Hägglund. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 09.10.2019.
Références
Glob Health Action. 2017;10(1):1305814
pubmed: 28562191
Int J Equity Health. 2017 Jan 28;16(1):29
pubmed: 28129771
Acta Paediatr. 2016 Jun;105(6):665-70
pubmed: 26880375
Dev Neurorehabil. 2018 Feb;21(2):108-120
pubmed: 28632466
Orthop Clin North Am. 2010 Oct;41(4):441-55
pubmed: 20868877
Dev Med Child Neurol. 2012 May;54(5):429-35
pubmed: 22435543
BMC Musculoskelet Disord. 2017 Dec 11;18(1):520
pubmed: 29228927
Pediatrics. 2013 Aug;132(2):e407-13
pubmed: 23858420
Scand J Rheumatol. 2017 Mar;46(2):143-151
pubmed: 27385007
Acta Paediatr. 2013 Jul;102(7):712-7
pubmed: 23551760
BMC Musculoskelet Disord. 2019 Feb 8;20(1):62
pubmed: 30736784
Dev Med Child Neurol. 2016 Aug;58(8):809-13
pubmed: 27098195
Dev Med Child Neurol. 1988 Feb;30(1):3-10
pubmed: 3371569
Dev Med Child Neurol. 2002 Sep;44(9):633-40
pubmed: 12227618
Soc Sci Med. 1995 Nov;41(10):1403-9
pubmed: 8560308
Dev Med Child Neurol. 2016 Mar;58(3):292-7
pubmed: 26426208
Dev Med Child Neurol. 2006 Jun;48(6):417-23
pubmed: 16700930
Ment Retard Dev Disabil Res Rev. 2002;8(3):198-205
pubmed: 12216064
Bone Joint J. 2014 Nov;96-B(11):1546-52
pubmed: 25371472
Bone Joint J. 2015 Oct;97-B(10):1441-4
pubmed: 26430023
BMC Pediatr. 2007 Dec 05;7:41
pubmed: 18053264
Dev Med Child Neurol. 2008 May;50(5):357-62
pubmed: 18355334
Eur J Paediatr Neurol. 2014 May;18(3):282-94
pubmed: 24412031
J Pediatr Orthop B. 2005 Jul;14(4):269-73
pubmed: 15931031
Dev Med Child Neurol. 2017 Aug;59(8):858-863
pubmed: 28509356
Glob Health Action. 2016 Jan - Dec;10(sup2):1272236
pubmed: 28219314
Disabil Rehabil. 2017 Apr;39(8):830-836
pubmed: 27044661
Disabil Rehabil. 2012;34(19):1589-95
pubmed: 22352294
Dev Med Child Neurol. 2011 Nov;53(11):1013-8
pubmed: 22014321