Epidemiology of eye diseases among children with disability in rural Bangladesh: a population‐based cohort study

To determine the mortality rate, immediate cause of death (CoD), and predictors of death in children with cerebral palsy (CP) in rural Bangladesh. 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. 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. 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. 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.

To collect data on refractive errors and visual impairment in adults with an intellectual disability (ID) in the Netherlands. A randomized sample of 2100 participants was drawn from a base population of 9000 adults with intellectual disabilities in the Netherlands. This article reports on the first 900 participants. All participants underwent a protocol-based on-site ophthalmological assessment carried out by skilled investigators. Co-operation was classified according to the number of tests that could be carried out reliably and was good or excellent in 80% of subjects, average in 13% and poor in 7%. Refraction could be reliably assessed in 505/900 (56%) subjects. There was an increased risk of visual impairment in all subgroups compared to the general Dutch population. Visual acuity (VA) was related to the level of ID, but refractive errors were not. New spectacles were prescribed in 106 cases (12%). Of 374 people in whom both monocular VA and the refractive error of the right eye could be reliably assessed, 153 (41%) had a pretest prescription, 16 (10%) of which we found to be inadequate. Of the 221 participants without a pretest prescription, 41 (19%) benefited from correction. Only 38/84 (45%) subjects aged 50 years or older, who could benefit from correction for near vision, had near spectacles. New correction increased the mean distant VA significantly from 0.44 to 0.65 (p < 0.0005). With some adaptations, visual screening is feasible in a majority of adults with ID. Visual impairment and refractive errors are much more prevalent in adults with ID than in the normal population. Accurate spectacle correction resulted in significant improvement in distant VA.

IntroductionPoverty is a key contributor to delayed diagnosis and limited access to early intervention and rehabilitation for children with cerebral palsy (CP) in rural Bangladesh. 97% of families of children with CP live below the poverty line in Bangladesh. Therefore, in low-and middle-income countries (LMICs), efforts to improve outcomes for children with CP (including health-related quality of life, motor function, communication, and nutritional attainments) should also include measures to improve family economic and social capital. We propose a randomised controlled trial (RCT) to evaluate the effectiveness of an integrated microfinance/livelihood and community-based rehabilitation (IMCBR) program for ultra-poor families of children with CP in rural Bangladesh.Material and methodsThis will be a cluster RCT comparing three arms: (a) integrated microfinance/livelihood and community-based rehabilitation (IMCBR); (b) community-based rehabilitation (CBR) alone; and (c) care-as-usual (i.e. no intervention). Seven clusters will be recruited within each arm. Each cluster will consist of 10 child-caregiver dyads totalling 21 clusters with 210 dyads. Parents recruited in the IMCBR arm will take part in a microfinance/livelihood program and Parent Training Module (PTM), their children with CP will take part in a Goal Directed Training (GDT) program. The programs will be facilitated by specially trained Community Rehabilitation Officers. The CBR arm includes the same PTM and GDT interventions excluding the microfinance/livelihood program. The care-as-usual arm will be provided with information about early intervention and rehabilitation. The assessors will be blinded to group allocation. The duration of the intervention will be 12 months; outcomes will be measured at baseline, 6 months, 12 months, and 18 months.ConclusionThis will be the first RCT of an integrated microfinance/livelihood and CBR program for children with CP in LMIC settings. Evidence from the study could transform approaches to improving wellbeing of children with CP and their ultra-poor families.

To examine the prevalence, clinical characteristics, and risk factors of cerebral palsy (CP) in children in Bangladesh. 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. 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. 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. 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.

Purpose Prior studies indicate high risk of mental health problems among caregivers of adolescents with cerebral palsy although limited consideration is given to caregivers in low- and middle-income countries. This study aimed to compare the burden of depression, anxiety and stress among caregivers of adolescents with cerebral palsy to caregivers of adolescents without disability in rural Bangladesh; and to identify factors unique to low- and middle-income countries that predict caregiver’s mental health. Methods Observational study comparing caregivers of adolescents with cerebral palsy identified through the Bangladesh Cerebral Palsy Register and caregivers of adolescents without disability from neighboring dwellings. Caregiver mental health was assessed using the Depression, Anxiety and Stress Scale-21, adolescent mental health using the Strengths and Difficulties Questionnaire and adolescent health-related quality of life using Kidscreen-27. Hierarchical multivariable regression analysis was performed. Results Participants were 154 caregivers of adolescents with cerebral palsy and 173 caregivers of adolescents without disability, matched on adolescent age and sex. Caregivers of adolescents with cerebral palsy reported significantly higher risk of depression and stress than caregivers of adolescents without disability (Effect Size 0.1 to 0.2, p < 0.05) although no difference on anxiety. Caregiver age, adolescent mental health, household overcrowding and adolescent hearing impairment were significant predictors of depression, anxiety and/or stress (0.1 to 2.2, p < 0.05). Conclusions Caregivers of adolescents with cerebral palsy in rural Bangladesh are at high risk of depression and stress. Initiatives to improve caregiver mental health are required; we recommend initiatives address adolescent mental health problems and include poverty reduction measures to improve social and economic capital. Improved understanding of the factors predicting caregiver depression, anxiety and stress unique to low and middle-income countries are necessary to guide policies and public health infrastructure development. Implications for rehabilitation Caregivers of adolescents with cerebral palsy in rural Bangladesh are at significantly higher risk of depression and stress than caregivers of adolescents without disability. We recommend interventions to improve caregiver mental health give specific consideration to older caregivers, those whose adolescent report mental health problems, families living in crowded households, and/or whose child has hearing impairment. We recommend interventions include poverty reduction measures to improve social and economic capital and target both caregivers and adolescents with CP to enhance long term outcomes.

Rapid Assessment of Avoidable Blindness in Iran

Background: We aimed to describe the burden, severity, and underlying factors of associated impairments among children with cerebral palsy (CP) in rural Bangladesh. Methods: This study reports findings from the Bangladesh Cerebral Palsy Register—the first population-based surveillance of children with CP in any LMIC, where children with confirmed CP aged < 18 years are registered by a multidisciplinary team following a standard protocol. Associated impairments were documented based on clinical assessment, available medical records, and a detailed clinical history provided by the primary caregivers. Descriptive analysis, as well as unadjusted and adjusted logistic regression, were completed using R. Results: Between January 2015 and February 2022, 3820 children with CP were registered (mean (SD) age at assessment: 7.6 (5.0) y; 39% female). Overall, 81% of children had ≥1 associated impairment; hearing: 18%, speech: 74%, intellectual: 40%, visual: 14%, epilepsy: 33%. The presence of a history of CP acquired post-neonatally and having a gross motor function classification system levels III–V significantly increased the odds of different types of associated impairments in these children. Most of the children had never received any rehabilitation services and were not enrolled in any mainstream or special education system. Conclusions: The burden of associated impairments was high among children with CP, with comparatively low receipt of rehabilitation and educational services in rural Bangladesh. Comprehensive intervention could improve their functional outcome, participation, and quality of life.

ObjectiveTo define the prevalence and seizure subtypes among children with cerebral palsy (CP) in rural Bangladesh and explore barriers to optimum epilepsy control.DesignProspective cohort study.SettingThe study was conducted in Shahjadpur,...

To describe visual function and ocular manifestations in patients with onset of cholestasis during the neonatal period. Patients with neonatal cholestasis, either transitory or chronic, who came for assessment to our tertiary referral centre were included in a cross-sectional study and underwent ophthalmological examinations including fundus photography. A total of 57 patients (24 girls and 33 boys), aged 0.4-18.0 years, were included. Of these, 28 patients had biliary atresia, 11 had Alagille's syndrome, five had progressive familiar intrahepatic cholestasis and nine had different disorders such as pituitary insufficiency, alpha-1-antitrypsin deficiency, mitochondriopathy, congenital infections or cholestasis caused by unknown reasons. Visual dysfunction and/or one or several ocular manifestations occurred in 39 out of 57 patients. Major ocular malformations occurred in five patients. Out of three patients with biliary atresia, one patient had severe visual impairment caused by microphthalmia and chorioretinal coloboma, one patient with Cat Eye syndrome had bilateral uveochorioretinal coloboma and one patient had Rieger's anomaly. Two patients, both with pituitary deficiency and transient cholestasis, had severe unilateral visual impairment caused by optic nerve hypoplasia. The majority (68%) of the patients with cholestasis had ocular manifestations. Although the severity of ocular complications varied with diagnosis, and was most apparent among patients with biliary atresia or pituitary deficiency, no conclusion can be drawn regarding the connections between these conditions from the present study. Nevertheless, ocular assessment is important for diagnostic purposes and for early intervention in patients with cholestasis.

The aim of the study was to investigate prevalence of visual impairment in rural central India. The population-based Central India Eye and Medical Study included 4711 subjects with an age of 30+ years. Presenting visual acuity (PRVA) and best-corrected visual acuity (BCVA) were recorded. Visual impairment and blindness were defined using the World Health Organization (WHO) standard and United States (US) standard. On the basis of PRVA and using WHO and US standards, 1049 [22%; 95% confidence interval (CI): 21.1, 23.5] subjects and 1290 (27%; 95% CI: 26.1, 28.7) subjects, respectively, were visually impaired, and 35 (0.7%; 95% CI: 0.5, 1.0) subjects and 116 (2.5%; 95% CI: 2.0, 2.9) subjects, respectively, were blind. The corresponding age-standardized prevalence figures were 17%, 21%, 0.5% and 2%, respectively. Using best-correcting glasses could eliminate PRVA-visual impairment/blindness in 729 subjects (67% of all subjects with visual impairment/blindness). On the basis of BCVA and using WHO and US standards, 333 (7%; 95% CI: 6.3, 7.8) subjects and 473 (10%; 95% CI: 9.2, 10.9) subjects, respectively, had visual impairment, and 22 (0.5%; 95% CI: 0.3, 0.7) and 31 (0.7%; 95% CI: 0.4, 0.9) subjects, respectively, were blind. Corresponding age-standardized prevalence figures were 5%, 8%, 0.4% and 0.5%, respectively. Causes for BCVA-visual impairment/blindness were cataract (75%), postoperative posterior capsular opacification (4%), surgical complications (2%), corneal opacifications (2%), age-related macular degeneration (2%), other macular diseases (1%), and glaucoma (1%). Age-standardized prevalence of PRVA-visual impairment/blindness (WHO definition) in the adult population of rural central India was 17%. Most frequent cause was undercorrected refractive error. Supply of correct glasses is the most efficient way to improve vision in the rural central India.

Purpose: To assess the nutritional status and underlying risk factors for malnutrition among children with cerebral palsy in rural Bangladesh.Materials and methods: We used data from the Bangladesh Cerebral Palsy Register; a prospective population based surveillance of children with cerebral palsy aged 0–18 years in a rural subdistrict of Bangladesh (i.e., Shahjadpur). Socio-demographic, clinical and anthropometric measurements were collected using Bangladesh Cerebral Palsy Register record form. Z scores were calculated using World Health Organization Anthro and World Health Organization AnthroPlus software.Results: A total of 726 children with cerebral palsy were registered into the Bangladesh Cerebral Palsy Register (mean age 7.6 years, standard deviation 4.5, 38.1% female) between January 2015 and December 2016. More than two-third of children were underweight (70.0%) and stunted (73.1%). Mean z score for weight for age, height for age and weight for height were −2.8 (standard deviation 1.8), −3.1 (standard deviation 2.2) and −1.2 (standard deviation 2.3) respectively. Moderate to severe undernutrition (i.e., both underweight and stunting) were significantly associated with age, monthly family income, gross motor functional classification system and neurological type of cerebral palsy.Conclusions: The burden of undernutrition is high among children with cerebral palsy in rural Bangladesh which is augmented by both poverty and clinical severity. Enhancing clinical nutritional services for children with cerebral palsy should be a public health priority in Bangladesh.Implications for RehabilitationPopulation-based surveillance data on nutritional status of children with cerebral palsy in Bangladesh indicates substantially high burden of malnutrition among children with CP in rural Bangladesh.Children with severe form of cerebral palsy, for example, higher Gross Motor Function Classification System (GMFCS) level, tri/quadriplegic cerebral palsy presents the highest proportion of severe malnutrition; hence, these vulnerable groups should be focused in designing nutrition intervention and rehabilitation programs.Disability inclusive and focused nutrition intervention programme need to be kept as priority in national nutrition policies and nutrition action plans specially in low- and middle-income countries.Community-based management of malnutrition has the potential to overcome this poor nutritional scenario of children with disability (i.e., cerebral palsy). The global leaders such as World Health Organization, national and international organizations should take this in account and conduct further research to develop nutritional guidelines for this vulnerable group of population.

In 2020, an estimated 596 million people worldwide had distance vision impairment and a further 510 million had uncorrected near vision impairment.1 Most of these people live in low-income and middle-income countries (LMIC). Eye health is also affected by conditions that do not, at least initially, impair vision. Although these conditions are not currently included in global prevalence estimates, they contribute substantially to the unmet need for eye health services. Vision is important for many aspects of life, and vision impairment can profoundly affect individuals, families, and society. Eye health touches all lives, either directly or indirectly, through its impact on those close to us. The year 2020 marks the culmination of the global initiative to eliminate avoidable blindness, VISION 2020: The Right to Sight (appendix 1 p 7). This initiative provided the framework for national programmes to address eye health over the past 20 years. In 2019, WHO published the World report on vision,2 which was endorsed by the 73rd World Health Assembly in 2020. The report and resolution call for the advancing of eye health as an integral part of universal health coverage, by implementation of integrated people-centred eye care, following the approach outlined in a broader health services framework.3 The Lancet Global Health Commission on Global Eye Health contends that eye health should be part of the mainstream agenda to achieve universal health coverage and sustainable development. We define eye health as the state in which vision, ocular health, and functional ability are maximised, thereby contributing to overall health and wellbeing, social inclusion, and quality of life. Eye health can be considered both a process and an outcome. We define eye care services as those that contribute to any of vision, ocular health, or functional ability being maximised. This report broadly divides into two halves. First, we present evidence for the importance of eye health, supporting the case for urgent action. Second, looking beyond 2020, we examine approaches to enable delivery of eye health services within universal health coverage. In section 1 we summarise the visual system, vision impairment, and common conditions. In section 2, we synthesise several reviews done by the Commission on the relevance of eye health to the Sustainable Development Goals (SDGs), as well as its impact on quality of life, general health, and mortality. In section 3, we describe the magnitude and causes of vision impairment in 2020 and projected global and regional trends. We explore service needs of people with non-vision impairing eye conditions. We propose a more standardised approach to reporting population-based eye health surveys and examine the disability weights applied to vision impairment. In section 4, we summarise findings from a systematic review of eye health economics, identifying important areas for future work. We present a new estimate of global lost productivity associated with vision impairment for 2020, and an analysis of the cost-effectiveness ratios for cataract surgery and refractive error services. In section 5, we outline a bibliometric analysis of eye health research since 2000, and report a global Grand Challenges project, highlighting crucial issues for concerted research and action. Lastly, we address the question of how health systems can practically advance towards delivering high quality integrated people-centred eye care within universal health coverage.2 We argue that business as usual will be insufficient, as evidenced by new analysis of effective cataract surgical coverage data. We examine service delivery components: primary eye care and integration with general health services, workforce strengthening, financing, health information systems, indicators, advocacy, and approaches to increase quality and equity. The development of global eye health This Commission views global eye health through the global health framework articulated by Koplan and colleagues.4 Eye health started with an understanding of the anatomy, physiology, diseases of the eye, and the development of clinical ophthalmology, the medical and surgical discipline for diagnosis and treatment of eye diseases. From the mid-20th century onwards (figure 1), there have been major technological advances in microsurgical techniques for cataract and other conditions, and equipment for diagnosis and treatment of major non-communicable eye diseases, resulting in more effective interventions. There has been an enormous demographic transition, with ageing populations and epidemiological changes from infectious diseases and towards non-communicable diseases, requiring accessible and affordable eye services with long-term follow-up. The increase in demand, emphasis on better quality, and higher cost of more sophisticated diagnostic and treatment services is requiring an increase in resources, which presents enormous public health challenges. Open in a separate window Figure 1 The development of global eye health Blue circles indicate major global developments. Red circles indicate major treatments and programmatic developments. WHA=World Health Assembly. IAPB=International Agency for the Prevention of Blindness. RAAB=Rapid Assessment of Avoidable Blindness. RACSS=Rapid Assessment of Cataract Surgical Services.

The purpose of this article is to highlight the challenge of uncorrected refractive error globally, as well as to discuss recent advocacy successes and innovative programs designed to address the need for broader refractive error service development, particularly in developing countries. The World Health Organization's VISION 2020: The Right to Sight program first posed the challenge to national governments to give priority to strategies and resources targeted towards avoidable causes of blindness and visual impairment, so that these unnecessary forms of blindness or visual impairment can be eliminated globally by the year 2020. The blindness prevention community is challenged to increase in scale its initiatives, which support the attainment of VISION 2020: The Right to Sight goals primarily and the United Nation's Millennium Development Goals indirectly. The Durban Declaration on Refractive Error and Service Development was the outcome of a meeting of eye‐care professionals, researchers, governments, civil society and industry in March 2007 and still stands as a guiding document to the blindness prevention community for the elimination of avoidable blindness due to uncorrected refractive error.

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. 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. 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. 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. Eleven per cent of children with cerebral palsy (CP) in Bangladesh had majorcongenital 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.

This research aim to identify the prevalence and factors associated with maternal stress among mothers of children with cerebral palsy in rural Bangladesh. A cross-sectional study was performed among 200 mothers of children with cerebral palsy picked up from rural Bangladesh using a simple random sampling technique. A questionnaire divided into various sections and administered by the researchers was used for data collection. Descriptive statistics and logistic regression models were applied to summarize the respondents’ characteristics, main outcomes (maternal stress levels), and factors associated with maternal stress. The overall prevalence of maternal stress among mothers of children with CP was 56.5%, and the median (IQR) age of respondents was 30 (14), whereas that of the children with CP was 6 (8). Factors associated with a higher prevalence of maternal stress were older mothers, divorced/separated, living in a nuclear family, income, male children, and higher negative family impact (p &lt; 0.05). The factors identified in this study could help to develop policies and strategies to minimize maternal stress associated with parenting children with cerebral palsy in rural Bangladeshi households.