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Development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan)

Almasri, N. A.; Saleh, M. LU ; Abu-Dahab, S.; Malkawi, S. H. and Nordmark, E. LU (2018) In Child: Care, Health and Development 44(1). p.131-139
Abstract

Aims: This study aims to describe the development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan) and to provide a baseline child and parent demographic information, birth history of the child participants, and distribution of the participants based on topographical distribution of cerebral palsy (CP) and functional classification systems. Methods: The CPUP-Jordan was developed using a similar framework of a follow-up surveillance programme for persons with CP in Sweden (CPUP). Standard assessment forms were utilized to collect data related to child and family demographics, child birth history, and functional classifications and physiotherapy and occupational therapy assessments and interventions. Research assistants were... (More)

Aims: This study aims to describe the development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan) and to provide a baseline child and parent demographic information, birth history of the child participants, and distribution of the participants based on topographical distribution of cerebral palsy (CP) and functional classification systems. Methods: The CPUP-Jordan was developed using a similar framework of a follow-up surveillance programme for persons with CP in Sweden (CPUP). Standard assessment forms were utilized to collect data related to child and family demographics, child birth history, and functional classifications and physiotherapy and occupational therapy assessments and interventions. Research assistants were trained to conduct the assessments. A secured web-based system was developed to store data and disseminate knowledge maintained in the registry. Children with CP were included in the registry if they have confirmed diagnosis of CP. The ascertainment age of inclusion and the minimum age of survival required are 4 years. Results: One hundred sixty-seven children were registered between 2013 and 2015 (mean age is 3.6 ± 3.0 years). Forty-two percent were born premature, and 48% were less than the normal birthweight. Perinatal causes were reported for 54% of the participants. The most common type of CP based on tone disturbance was spastic type, and the most common topographical distributions of motor dysfunction were quadriplegia followed by diplegia. Fifty-six percent of the participants had severe limitation in ambulation; 48% had restricted manual abilities, and 47% had limited communication abilities even with familiar family members and partners. Conclusions: The development of CPUP-Jordan registry for children with CP proved to be both feasible and informative. The registry baseline descriptive data were similar to those reported in previous research in Jordan supporting validity of the data. The implementation of CPUP-Jordan at national level is expected to have a positive impact on children with CP, clinicians, policymakers, and researchers.

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Please use this url to cite or link to this publication:
author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
cerebral palsy, CPUP-Jordan, developing countries, Jordan, registry
in
Child: Care, Health and Development
volume
44
issue
1
pages
9 pages
publisher
Wiley-Blackwell
external identifiers
  • scopus:85038020688
ISSN
0305-1862
DOI
10.1111/cch.12527
language
English
LU publication?
yes
id
e452ed85-8080-4d25-bb59-cad38a3b559b
date added to LUP
2018-01-02 14:47:09
date last changed
2018-01-24 16:02:00
@article{e452ed85-8080-4d25-bb59-cad38a3b559b,
  abstract     = {<p>Aims: This study aims to describe the development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan) and to provide a baseline child and parent demographic information, birth history of the child participants, and distribution of the participants based on topographical distribution of cerebral palsy (CP) and functional classification systems. Methods: The CPUP-Jordan was developed using a similar framework of a follow-up surveillance programme for persons with CP in Sweden (CPUP). Standard assessment forms were utilized to collect data related to child and family demographics, child birth history, and functional classifications and physiotherapy and occupational therapy assessments and interventions. Research assistants were trained to conduct the assessments. A secured web-based system was developed to store data and disseminate knowledge maintained in the registry. Children with CP were included in the registry if they have confirmed diagnosis of CP. The ascertainment age of inclusion and the minimum age of survival required are 4 years. Results: One hundred sixty-seven children were registered between 2013 and 2015 (mean age is 3.6 ± 3.0 years). Forty-two percent were born premature, and 48% were less than the normal birthweight. Perinatal causes were reported for 54% of the participants. The most common type of CP based on tone disturbance was spastic type, and the most common topographical distributions of motor dysfunction were quadriplegia followed by diplegia. Fifty-six percent of the participants had severe limitation in ambulation; 48% had restricted manual abilities, and 47% had limited communication abilities even with familiar family members and partners. Conclusions: The development of CPUP-Jordan registry for children with CP proved to be both feasible and informative. The registry baseline descriptive data were similar to those reported in previous research in Jordan supporting validity of the data. The implementation of CPUP-Jordan at national level is expected to have a positive impact on children with CP, clinicians, policymakers, and researchers.</p>},
  author       = {Almasri, N. A. and Saleh, M. and Abu-Dahab, S. and Malkawi, S. H. and Nordmark, E.},
  issn         = {0305-1862},
  keyword      = {cerebral palsy,CPUP-Jordan,developing countries,Jordan,registry},
  language     = {eng},
  month        = {01},
  number       = {1},
  pages        = {131--139},
  publisher    = {Wiley-Blackwell},
  series       = {Child: Care, Health and Development},
  title        = {Development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan)},
  url          = {http://dx.doi.org/10.1111/cch.12527},
  volume       = {44},
  year         = {2018},
}