Skip to main content

Lund University Publications

LUND UNIVERSITY LIBRARIES

Improving the Health of Individuals With Cerebral Palsy : Protocol for the Multidisciplinary Research Program MOVING ON WITH CP

Alriksson-Schmidt, Ann LU ; Jarl, Johan LU orcid ; Rodby-Bousquet, Elisabet LU ; Lundkvist Josenby, Annika LU orcid ; Westbom, Lena LU ; Himmelmann, Kate ; Stadskleiv, Kristine ; Ödman, Pia ; Svensson, Ingrid LU and Antfolk, Christian LU , et al. (2019) In JMIR Research Protocols 8(10).
Abstract

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: The overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and... (More)

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: 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: 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: The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained.

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): DERR1-10.2196/13883.

(Less)
Please use this url to cite or link to this publication:
author
; ; ; ; ; ; ; ; and , et al. (More)
; ; ; ; ; ; ; ; ; ; ; ; and (Less)
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
JMIR Research Protocols
volume
8
issue
10
article number
e13883
publisher
JMIR Publications Inc.
external identifiers
  • scopus:85095729714
  • pmid:31599737
ISSN
1929-0748
DOI
10.2196/13883
language
English
LU publication?
yes
additional info
©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.
id
27563389-a40a-43b7-93f0-66b3b0963819
date added to LUP
2019-10-17 08:41:38
date last changed
2024-01-16 13:28:05
@article{27563389-a40a-43b7-93f0-66b3b0963819,
  abstract     = {{<p>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.</p><p>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.</p><p>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.</p><p>RESULTS: The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained.</p><p>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.</p><p>INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/13883.</p>}},
  author       = {{Alriksson-Schmidt, Ann and Jarl, Johan and Rodby-Bousquet, Elisabet and Lundkvist Josenby, Annika and Westbom, Lena and Himmelmann, Kate and Stadskleiv, Kristine and Ödman, Pia and Svensson, Ingrid and Antfolk, Christian and Malesevic, Nebojsa and Jeglinsky, Ira and Saha, Sanjib and Hägglund, Gunnar}},
  issn         = {{1929-0748}},
  language     = {{eng}},
  month        = {{10}},
  number       = {{10}},
  publisher    = {{JMIR Publications Inc.}},
  series       = {{JMIR Research Protocols}},
  title        = {{Improving the Health of Individuals With Cerebral Palsy : Protocol for the Multidisciplinary Research Program MOVING ON WITH CP}},
  url          = {{http://dx.doi.org/10.2196/13883}},
  doi          = {{10.2196/13883}},
  volume       = {{8}},
  year         = {{2019}},
}