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Background: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would benefit from a palliative approach to relieve suffering. Bangladesh is a lower-middle income country with isolated provision of palliative care. Aim: To synthesise existing evidence describing serious health-related suffering of children with disability and their families living in Bangladesh and the intersection between this suffering, palliative care and rehabilitation. Design: Scoping review methodology. Data sources: A search strategy related to serious health-related suffering and childhood disability was applied to online databases and grey literature. English language studies (1990–2021) were included. Papers pertaining to serious health-related suffering of typically developing children and those over eighteen years were excluded. Data which addressed the three domains of serious health-related suffering (physical, social and emotional/spiritual) were extracted. Palliative care interventions were assessed with a pre-existing checklist. Results: Forty-six studies were included, representing ten different methodologies. Sample sizes ranged from 11 to 2582 participants, with 87% of studies including children with cerebral palsy. Serious health-related suffering was described in 100% of the studies, only 14 of the studies described specific interventions to mitigate suffering. Convergence between palliative care and rehabilitation approaches was evident. Conclusion: Findings document the extensive nature and burden of serious childhood health-related suffering that may be remediated by a palliative approach. They highlight the urgent need to prioritise service development and research in this area. [ABSTRACT FROM AUTHOR]

Aim: To describe the epidemiology of cerebral palsy (CP) in children from low‐ and middle‐income countries (LMICs) using data from the Global Low‐ and Middle‐Income Country CP register (GLM‐CPR). Method: The GLM‐CPR is a multi‐country initiative that combines and compares data from children with CP (<18y) in LMICs. Children with CP are registered after detailed neurodevelopmental assessment by a multidisciplinary medical team using a harmonized protocol. Data are collected on agreed core variables. Descriptive analyses are completed to report findings from participating countries. Results: Between January 2015 and May 2019, 2664 children were recruited from Bangladesh, Nepal, Indonesia, and Ghana (mean age [SD] at assessment: 7y 8mo [4y 8mo], 95% confidence interval 7y 6mo−7y 11mo; male [n=1615] 60.6%, female [n=1049] 39.4%). Overall, 86.6% children acquired CP prenatally and perinatally (e.g. preterm birth, birth asphyxia, neonatal encephalopathy). Median age at CP diagnosis was 3 years. Moreover, 79.2% children had spastic CP and 73.3% were classified in Gross Motor Function Classification System levels III to V. Notably, 47.3% of children never received rehabilitation services (median age at receiving rehabilitation services was 3y; 12.7% received assistive devices) and 75.6% of school‐age children had no access to education. Interpretation: Population‐based data show that the proportion of severe cases of CP is very high in LMICs. Children with CP in LMICs lack access to rehabilitation and educational services and a large proportion of children have potentially preventable risk factors, for example, birth asphyxia and neonatal infections. Delayed diagnosis, severe motor impairments, and lack of rehabilitation in most children call for urgent action to identify preventive opportunities and promote early diagnosis and intervention for children with CP in LMICs. What this paper addsThe proportion of severe cases of cerebral palsy (CP) is very high in rural low‐ and middle‐income countries (LMICs).Children with CP in LMICs lack access to rehabilitation and educational services.A large proportion of children with CP in LMICs have potentially preventable risk factors. What this paper adds: The proportion of severe cases of cerebral palsy (CP) is very high in rural low‐ and middle‐income countries (LMICs).Children with CP in LMICs lack access to rehabilitation and educational services.A large proportion of children with CP in LMICs have potentially preventable risk factors. This original article is commented by Paneth on page 1245 of this issue. [ABSTRACT FROM AUTHOR]

Aim: To determine the proportion of children with cerebral palsy (CP) who had major congenital anomalies, describe the types of disorders, and report on the children's functional outcomes.Method: Data were extracted from the Bangladesh Cerebral Palsy Register (BCPR). Descriptive analyses were conducted on children with CP and major congenital anomalies. Odds ratios (ORs) with 95% confidence intervals (CIs) were calculated to measure the association between major congenital anomalies, clinical severity, and presence of comorbidities.Results: Between January 2015 and December 2016, 726 children with CP were newly registered with the BCPR (277 females, 449 males; mean age [SD] at registration 90mo [54mo], 4mo-18y). Seventy-eight children (11%) had a major congenital anomaly. Neurological (86%) and musculoskeletal congenital anomalies (10%) were the most common. Microcephaly was the most common congenital anomaly (83%). The odds of severe functional motor limitations (OR=2.4, 95% CI=1.9-2.9), epilepsy (OR=1.6, 95% CI=1.1-2.1), visual impairment (OR=2.6, 95% CI=2.0-3.2), presence of strabismus (OR=3.9, 95% CI=3.8-4.4), hearing (OR=1.2, 95% CI=0.6-1.9), speech (OR=5.4, 95% CI=4.6-6.2), and intellectual impairments (OR=2.3, 95% CI=1.8-2.8) were higher in children with congenital anomalies compared to children without.Interpretation: The proportion of children with major congenital anomalies in the BCPR (11%) was lower than that identified in higher-income countries. This may be because of differences in how congenital anomalies are diagnosed as well as the impact of survival bias. In Bangladesh, children with CP and major congenital anomalies are more likely to have severe functional motor limitations and associated comorbidities.What This Paper Adds: Eleven per cent of children with cerebral palsy (CP) in Bangladesh had major congenital anomalies. Neurological and musculoskeletal congenital anomalies were the most common. Severe functional motor limitations and associated comorbidities were more common in children presenting with CP and major congenital anomalies. [ABSTRACT FROM AUTHOR]

Aim: To determine the mortality rate, immediate cause of death (CoD), and predictors of death in children with cerebral palsy (CP) in rural Bangladesh.Method: We carried out a prospective population-based surveillance study of children with CP aged 0 to 18 years registered with the Bangladesh Cerebral Palsy Register (BCPR) between January 2015 and December 2016, with subsequent follow-up until December 2017. Verbal autopsy was applied to assign immediate CoD. Crude mortality rates, hazard ratios of death, and survival probabilities were estimated.Results: Twenty-nine of the 678 children in the BCPR died during the study period, resulting in a crude mortality rate of 19.5 per 1000 person-years of observation (total follow-up duration 1486.8 person-years; mean 2y [standard deviation 6mo]). The leading immediate CoD was meningitis (n=9) and pneumonia (n=8). Survival probability and hazard ratio of death was significantly associated with age, Gross Motor Functional Classification System level, and associated impairments. Severe underweight and/or severe stunting was significantly overrepresented among deceased children than others in the cohort (p<0.05) when compared with the World Health Organization reference population.Interpretation: The majority of deaths were due to potentially preventable causes. The life expectancy of these children could have been extended by ensuring primary healthcare and nutritional supplementation.What This Paper Adds: Mortality rate in children with cerebral palsy (CP) in rural Bangladesh is 19.5 per 1000 person-years. The majority of children with CP died from potentially preventable and treatable conditions. Motor severity, associated impairments, and malnutrition make children with CP vulnerable to premature death in rural Bangladesh. [ABSTRACT FROM AUTHOR]

Aim: To examine the prevalence, clinical characteristics, and risk factors of cerebral palsy (CP) in children in Bangladesh.Method: The Bangladesh CP Register is an ongoing population-based surveillance database of children with CP from a geographically defined area in Bangladesh. Cases were defined based on Surveillance of CP in Europe and Australian CP Register criteria after clinical assessments and identification by the key informant's method.Results: In total, 726 children with CP were identified between January 2015 and December 2016. Mean age was 7 years 7 months (standard deviation [SD] 4y 6mo; range: 4.8mo-18y; median 7y 1.2mo; 61.8% male, 38.2% female). Mean age at CP diagnosis was 5 years 2 months (SD 3.8). Observed prevalence was 3.4 per 1000 children (95% confidence interval [CI]: 3.2-3.7), resulting in an estimated 233 514 children (95% CI: 219 778-254 118) with CP in Bangladesh. The majority (79.6%) had spastic CP. Altogether, 79.6% of the children with CP had at least one associated impairment (speech 67.6%, intellectual 39.0%, epilepsy 23.7%, visual 10.2%, and hearing 10.2%). In total, 78.2% never received rehabilitation.Interpretation: In Bangladesh, the burden of CP is high, and diagnosis is substantially delayed, limiting opportunities for early intervention. There is a lack of available services and the majority of the children had preventable risk factors.What This Paper Adds: Prevalence of cerebral palsy (CP) is 3.4 per 1000 children in rural Bangladesh. There are an estimated 233 514 children with CP in Bangladesh. The majority have potentially preventable risk factors. Diagnosis of CP is delayed, limiting opportunities for early intervention. There is a lack of available services for children with CP in rural Bangladesh. [ABSTRACT FROM AUTHOR]

Background: The causes and pathogenesis of cerebral palsy (CP) are all poorly understood, particularly in low- and middle-income countries (LMIC). There are gaps in knowledge about CP in Bangladesh, especially in the spheres of epidemiological research, intervention and service utilization. In high-income countries CP registers have made substantial contributions to our understanding of CP. In this paper, we describe a pilot study protocol to develop, implement, and evaluate a CP population register in Bangladesh (i.e., Bangladesh Cerebral Palsy Register - BCPR) to facilitate studies on prevalence, severity, aetiology, associated impairments and risk factors for CP.Methods/design: The BCPR will utilise a modified version of the Australian Cerebral Palsy Register (ACPR) on a secured web-based platform hosted by the Cerebral Palsy Alliance Research Institute, Australia. A standard BCPR record form (i.e., data collection form) has been developed in consultation with local and international experts. Using this form, the BPCR will capture information about maternal health, birth history and the nature of disability in all children with CP aged <18 years. The pilot will be conducted in the Shahjadpur sub-district of Sirajgonj district in the northern part of Bangladesh. There are 296 villages in Shahjadpur, a total population of 561,076 (child population ~ 226,114), an estimated 70,998 households and 12,117 live births per annum. Children with CP will be identified by using the community based Key Informants Method (KIM). Data from the completed BPCR record together with details of assessment by a research physician will be entered into an online data repository.Discussion: Once implemented, BCPR will be, to the best of our knowledge, the first formalised CP register from a LMIC. Establishment of the BCPR will enable estimates of prevalence; facilitate clinical surveillance and promote research to improve the care of individuals with CP in Bangladesh. [ABSTRACT FROM AUTHOR]

Background: The Rapid Assessment of Disability (RAD) questionnaire measures the magnitude and impact of disability and aims to inform the design of disability inclusive development programs. This paper reports the psychometric evaluation of the RAD. Methods: The initial version of the RAD comprised five sections: 1) demographics, 2) functioning, 3) rights awareness, 4) well-being, and 5) access to the community. Item functioning and construct validity were assessed in a population-based study in Bangladesh. Data were analysed using descriptive statistics (sections 2 and 5) and Rasch modelling (sections 3 and 4). A subsequent case-control study in Fiji tested the refined questionnaire in a cross-cultural setting and assessed the sensitivity and specificity of the RAD section 2 to identify people with disability. Results: 2,057 adults took part in the study (1,855 in Bangladesh and 202 in Fiji). The prevalence of disability estimated using RAD section 2 in Bangladesh was 10.5% (95% CI 8.8-12.2), with satisfactory sensitivity and specificity (62.4% and 81.2%, respectively). Section 3 exhibited multidimensionality and poor differentiation between levels of rights awareness in both Bangladesh (person separation index [PSI] = 0.71) and Fiji (PSI = 0.0), and was unable to distinguish between people with and without disability (Bangladesh p = 0.786, Fiji p = 0.403). This section was subsequently removed from the questionnaire pending re-development. Section 4 had good ability to differentiate between levels of well-being (PSI = 0.82). In both countries, people with disability had significantly worse well-being scores than people without disability (p < 0.001) and also access to all sectors of community except legal assistance, drinking water and toilets (p < 0.001). Conclusions: Filed-testing in Bangladesh and Fiji confirmed the psychometric robustness of functioning, well-being, and community access sections of the RAD. Information from the questionnaire can be used to inform and evaluate disability inclusive development programs. [ABSTRACT FROM AUTHOR]

Abstract Given the numbers of disabled children in Bangladesh and the lack of trained professionals, innovative forms of service delivery are required. The Bangladesh Protibondhi Foundation has developed an outreach parent training service based at two centres, one urban and one rural. Mothers are shown how to use pictorially based Distance Training Packages (DTP), which they take home. This paper presents findings concerning factors which seem to affect mothers’ attendance with their children at DTP advisory sessions. The study followed 47 children with cerebral palsy, aged between 2 and 5.5 years, over a period of around 18 months. The main factors predicting higher attendance were the child’s sex (i.e. boys were brought back more often), particularly in the rural area, and lower adaptation to the child reported by the mother. The problems described by mothers in using the DTP advisory service were economic (such as transport costs), cultural (such as mothers not being permitted out alone), and medical (such as the child having repeated fits). The implications for future service development are discussed. [ABSTRACT FROM AUTHOR]