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      Rehabilitation status of children with cerebral palsy in Bangladesh: Findings from the Bangladesh Cerebral Palsy Register

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          Abstract

          Objective

          The objective of this study was to assess the rehabilitation status and factors associated with rehabilitation service utilisation among children with cerebral palsy (CP) in Bangladesh.

          Materials and methods

          This is a population-based surveillance study conducted among children with CP registered in the Bangladesh CP Register (BCPR), the first population-based register of children with CP aged <18 years (y) in Bangladesh. Children with CP were identified from the community using the key informant method and underwent a detailed neurodevelopmental assessment. Socio-demographic, clinical and rehabilitation status were documented. Unadjusted and adjusted analyses with a 95% confidence interval (CI) were used to identify potential predictors of rehabilitation service uptake.

          Results

          Between January 2015 and December 2019, 2852 children with CP were registered in the BCPR (mean (standard deviation, SD) age: 7 y 8 months (mo) (4 y 7 mo), 38.5% female). Of these, 50.2% had received rehabilitation services; physiotherapy was the most common type of service (90.0%). The mean (SD) age at commencement of rehabilitation services was 3 y 10 mo (3 y 1 mo). The odds of not receiving rehabilitation was significantly higher among female children (adjusted odds ratio (aOR) 1.3 [95% CI: 1.0–1.7], children whose mothers were illiterate and primary level completed (aOR 2.1 [95% CI: 1.4–3.1] and aOR 1.5 [95% CI: 1.1–2.1], respectively), fathers were illiterate (aOR 1.9 [95% CI: 1.3–2.8]), had a monthly family income ~US$ 59–118 (aOR: 1.8 [95% CI: 1.2–2.6]), had hearing impairment (aOR: 2.3 [95% CI: 1.5–3.5]) and motor severity (i.e. Gross Motor Function Classification System level III (aOR: 0.6 [95% CI: 0.3–0.9]) and level V (aOR: 0.4 [95% CI: 0.2–0.7])).

          Conclusions

          Rehabilitation status was poor among the majority of the children with CP in the BCPR cohort, limiting their opportunities for functional improvement. A community-based rehabilitation model focusing on socio-demographic and clinical characteristics should be a public health priority in Bangladesh.

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          Most cited references39

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          A report: the definition and classification of cerebral palsy April 2006.

          For a variety of reasons, the definition and the classification of cerebral palsy (CP) need to be reconsidered. Modern brain imaging techniques have shed new light on the nature of the underlying brain injury and studies on the neurobiology of and pathology associated with brain development have further explored etiologic mechanisms. It is now recognized that assessing the extent of activity restriction is part of CP evaluation and that people without activity restriction should not be included in the CP rubric. Also, previous definitions have not given sufficient prominence to the non-motor neurodevelopmental disabilities of performance and behaviour that commonly accompany CP, nor to the progression of musculoskeletal difficulties that often occurs with advancing age. In order to explore this information, pertinent material was reviewed on July 11-13, 2004 at an international workshop in Bethesda, MD (USA) organized by an Executive Committee and participated in by selected leaders in the preclinical and clinical sciences. At the workshop, it was agreed that the concept 'cerebral palsy' should be retained. Suggestions were made about the content of a revised definition and classification of CP that would meet the needs of clinicians, investigators, health officials, families and the public and would provide a common language for improved communication. Panels organized by the Executive Committee used this information and additional comments from the international community to generate a report on the Definition and Classification of Cerebral Palsy, April 2006. The Executive Committee presents this report with the intent of providing a common conceptualization of CP for use by a broad international audience.
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            Global estimates of the need for rehabilitation based on the Global Burden of Disease study 2019: a systematic analysis for the Global Burden of Disease Study 2019

            Summary Background Rehabilitation has often been seen as a disability-specific service needed by only few of the population. Despite its individual and societal benefits, rehabilitation has not been prioritised in countries and is under-resourced. We present global, regional, and country data for the number of people who would benefit from rehabilitation at least once during the course of their disabling illness or injury. Methods To estimate the need for rehabilitation, data from the Global Burden of Diseases, Injuries, and Risk Factors Study 2019 were used to calculate the prevalence and years of life lived with disability (YLDs) of 25 diseases, impairments, or bespoke aggregations of sequelae that were selected as amenable to rehabilitation. All analyses were done at the country level and then aggregated to seven regions: World Bank high-income countries and the six WHO regions (ie, Africa, the Americas, Southeast Asia, Europe, Eastern Mediterranean, and Western Pacific). Findings Globally, in 2019, 2·41 billion (95% uncertainty interval 2·34–2·50) individuals had conditions that would benefit from rehabilitation, contributing to 310 million [235–392] YLDs. This number had increased by 63% from 1990 to 2019. Regionally, the Western Pacific had the highest need of rehabilitation services (610 million people [588–636] and 83 million YLDs [62–106]). The disease area that contributed most to prevalence was musculoskeletal disorders (1·71 billion people [1·68–1·80]), with low back pain being the most prevalent condition in 134 of the 204 countries analysed. Interpretation To our knowledge, this is the first study to produce a global estimate of the need for rehabilitation services and to show that at least one in every three people in the world needs rehabilitation at some point in the course of their illness or injury. This number counters the common view of rehabilitation as a service required by only few people. We argue that rehabilitation needs to be brought close to communities as an integral part of primary health care to reach more people in need. Funding Bill & Melinda Gates Foundation.
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              Development and reliability of a system to classify gross motor function in children with cerebral palsy

              To address the need for a standardized system to classify the gross motor function of children with cerebral palsy, the authors developed a five-level classification system analogous to the staging and grading systems used in medicine. Nominal group process and Delphi survey consensus methods were used to examine content validity and revise the classification system until consensus among 48 experts (physical therapists, occupational therapists, and developmental pediatricians with expertise in cerebral palsy) was achieved. Interrater reliability (kappa) was 0.55 for children less than 2 years of age and 0.75 for children 2 to 12 years of age. The classification system has application for clinical practice, research, teaching, and administration.
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                Author and article information

                Contributors
                Role: Data curationRole: Formal analysisRole: Project administrationRole: VisualizationRole: Writing – original draft
                Role: Data curationRole: Formal analysisRole: Project administrationRole: VisualizationRole: Writing – review & editing
                Role: Data curationRole: Project administrationRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Project administrationRole: ResourcesRole: SupervisionRole: Writing – review & editing
                Role: SupervisionRole: Writing – review & editing
                Role: SupervisionRole: Writing – review & editing
                Role: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Project administrationRole: ResourcesRole: SoftwareRole: SupervisionRole: ValidationRole: VisualizationRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS One
                PLoS One
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                3 May 2021
                2021
                : 16
                : 5
                : e0250640
                Affiliations
                [1 ] CSF Global, Dhaka, Bangladesh
                [2 ] Asian Institute of Disability and Development (AIDD), University of South Asia, Dhaka, Bangladesh
                [3 ] School of Health, Medical and Applied Sciences, Central Queensland University, Rockhampton, Queensland, Australia
                [4 ] Cerebral Palsy Alliance, Sydney Medical School, The University of Sydney, Camperdown, New South Wales, Australia
                [5 ] Grace Centre for Newborn Intensive Care, Sydney Children’s Hospital Network, Westmead, New South Wales, Australia
                [6 ] Discipline of Child and Adolescent Health, Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia
                [7 ] Central Queensland Public Health Unit, Central Queensland Hospital and Health Service, Rockhampton, Queensland, Australia
                University of Southern Queensland, AUSTRALIA
                Author notes

                Competing Interests: The authors declare that there is no conflict of interest.

                Author information
                https://orcid.org/0000-0002-0661-4113
                Article
                PONE-D-21-00848
                10.1371/journal.pone.0250640
                8092763
                33939721
                2870d36e-5b9c-4938-aa9a-8eb8aae254eb
                © 2021 Al Imam et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 9 January 2021
                : 8 April 2021
                Page count
                Figures: 1, Tables: 5, Pages: 16
                Funding
                Funded by: funder-id http://dx.doi.org/10.13039/100012256, Cerebral Palsy Alliance Research Foundation;
                Award ID: PG4314
                Award Recipient :
                Funded by: funder-id http://dx.doi.org/10.13039/100012256, Cerebral Palsy Alliance Research Foundation;
                Award ID: CDF 0116
                Award Recipient :
                This study has been conducted as a part of the BCPR research project. The BCPR is funded by the Research Foundation of Cerebral Palsy Alliance (PG4314 – Bangladesh CP Register) and internal funding from CSF Global, Bangladesh. GK is supported by the Cerebral Palsy Alliance Research Foundation Career Development Fellowship (CDF 0116).
                Categories
                Research Article
                People and Places
                Population Groupings
                Age Groups
                Children
                People and Places
                Population Groupings
                Families
                Children
                People and Places
                Geographical Locations
                Asia
                Bangladesh
                Social Sciences
                Economics
                Economic Geography
                Low and Middle Income Countries
                Earth Sciences
                Geography
                Economic Geography
                Low and Middle Income Countries
                Medicine and Health Sciences
                Ophthalmology
                Visual Impairments
                Medicine and Health Sciences
                Medical Conditions
                Disabilities
                People and Places
                Population Groupings
                Families
                Mothers
                People and Places
                Population Groupings
                Families
                Fathers
                Medicine and Health Sciences
                Otorhinolaryngology
                Laryngology
                Speech-Language Pathology
                Speech Therapy
                Custom metadata
                The authors are unable to share the de-identified line listed data as the data contain potentially sensitive and identifying patient information; specifically sensitivities around the topic and due to the risk of participant identification given the specific/ defined study location and unique characteristics of participants. This is imposed by the Asian Institute of Disability and Development (AIDD) Human Research Ethics Committee (HREC) as part of the approval for the Bangladesh Medical Research Council ethics. Researchers may contact the AIDD for data access at the following: AIDD, House # 76 & 78, Road # 14, Block B, Banani R/A, Dhaka – 1213, Bangladesh; Phone: +88-02-55040839; Email: disabilityasia@ 123456gmail.com .

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