Hospital-based surveillance of children with cerebral palsy in Suriname: The Suriname cerebral palsy register.

AIM: To describe the aetiological risk factors, clinical characteristics, access to rehabilitation, and educational status of children with cerebral palsy (CP) in Suriname. METHOD: Hospital-based surveillance of children with CP aged younger than 18 years was conducted at the Academic Hospital Paramaribo, Suriname (known as the Suriname CP Register [SUR-CPR]). Data were collected on sociodemographic characteristics, aetiological risk factors, clinical characteristics, rehabilitation, and educational status. Registry data on aetiological risk factors were compared with available national prevalence rates in Suriname. Descriptive statistics were reported. RESULTS: Between August 2018 and March 2020, 82 children with CP (mean [SD] age 5 years 10 months [3 years 10 months]) attending the Academic Hospital Paramaribo were registered in the SUR-CPR. The mean (SD) age at diagnosis was 5 years 5 months (4 years 1 month). Spastic CP was predominant in 90.8% of children and 58.8% were classified in Gross Motor Function Classification System levels III to V. Overall, 43.9% had preterm birth compared with 13.9% reported nationally (p < 0.001) and 61.6% had birth-related complications compared with 15% reported nationally (p < 0.001). Additionally, 39.1% had birth asphyxia and 23.2% had early feeding difficulties. Sixty-two percent were admitted to the neonatal intensive care unit, 54.0% of whom required ventilation. Most children (82.5%) had CP acquired pre- or perinatally and 17.5% had CP acquired postneonatally. Seventeen percent had never received any rehabilitation services, and 31.9% of the school-aged children were not enrolled in any education system. INTERPRETATION: The high burden of known aetiological risk factors, delayed diagnosis, and severe functional impairment among children with CP registered at the Academic Hospital Paramaribo is concerning. Public health interventions targeting early diagnosis and early intervention could improve the functional outcome of children with CP in Suriname.

The effectiveness of vaccination for preventing hospitalisation with COVID-19 in regional Queensland: a data linkage study.

OBJECTIVE: To estimate the effectiveness of vaccination against severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) for protecting people in a largely coronavirus disease 2019 (COVID-19)-naïve regional population from hospitalisation with symptomatic COVID-19. DESIGN: Retrospective cohort study; analysis of positive SARS-CoV-2 polymerase chain reaction (PCR) test results linked with Central Queensland hospitals admissions data and Australian Immunisation Register data. SETTING, PARTICIPANTS: Adult residents of Central Queensland, 1 January - 31 March 2022. MAIN OUTCOME MEASURES: Vaccine effectiveness (1 - relative risk of hospitalisation for vaccinated and unvaccinated people) with respect to protecting against hospitalisation with symptomatic COVID-19 after primary vaccination course only (two doses of an approved SARS-CoV-2 vaccine) and after a booster vaccine dose. RESULTS: Positive SARS-CoV-2 test results were recorded during 1 January - 31 March 2022 for 9682 adults, 7244 of whom had been vaccinated (75%); 5929 people were aged 40 years or younger (62%), 5180 were women (52%). Forty-seven people were admitted to hospital with COVID-19 (0.48%), four required intensive care (0.04%); there were no in-hospital deaths. Vaccine effectiveness was 69.9% (95% confidence interval [CI], 44.3-83.8%) for people who had received only a primary vaccination course and 81.8% (95% CI, 39.5-94.5%) for people who had also received a booster. Of the 665 Aboriginal and Torres Strait Islander adults with positive SARS-CoV-2 test results, 401 had been vaccinated (60%). Six Indigenous people were hospitalised with symptomatic COVID-19 (0.9%); vaccine effectiveness was 69.4% (95% CI, -56.5% to 95.8%) for Indigenous people who had received a primary vaccination course only or the primary course and a booster. CONCLUSION: The hospitalisation rate for Central Queensland people with PCR-confirmed Omicron variant SARS-CoV-2 infections during the first quarter of 2022 was low, indicating the protection afforded by vaccination and the value of booster vaccine doses.

SUpporting People in extreme POverty with Rehabilitation and Therapy (SUPPORT CP): A trial among families of children with cerebral palsy in Bangladesh.

AIM: To test the efficacy of an integrated microfinance/livelihood and community-based rehabilitation (IMCBR) programme in improving health-related quality of life (HRQoL) and motor function of children with cerebral palsy (CP) and gain in social capital to their ultra-poor families in rural Bangladesh. METHOD: This was an open-label cluster randomized control trial. Children with CP aged 5 years or under were randomly allocated to three arms; Arm A: IMCBR; Arm B: community-based rehabilitation (CBR); and Arm C: care-as-usual. The CBR was modified with phone follow-up followed by home-based CBR at 2.5 months post-enrolment because of the COVID-19 pandemic. Intention-to-treat analysis was performed. RESULTS: Twenty-four clusters constituting 251 children-primary caregivers' dyads were assigned to three arms (Arm A = 80; Arm B = 82; Arm C = 89). Between baseline and endline, the percentage mean change in the physical functioning domain of HRQoL was highest in Arm A (30.0%) with a significant mean difference between Arm A and Arm B (p = 0.015). Improvement in the mean social capital score was significantly higher in Arm A compared to Arm C (p < 0.001). INTERPRETATION: The findings suggest that IMCBR could improve the HRQoL of children with CP and the social capital of their ultra-poor families. Long-term follow-up of the trial participants and future exploration of such interventions are essential. The integrated livelihood and CBR programme holds potential to improve health and well-being of children with CP and their ultra-poor families. WHAT THIS PAPER ADDS: Half of the families who received livelihoods were impacted by a cold-wave, suggesting the need for a more disaster-resilient livelihood asset. The integration of livelihood with community-based rehabilitation programme helps to improve health-related quality of life of children with cerebral palsy and the social capital of their ultra-poor families.

Novel weight estimation equation for children with cerebral palsy in low-resource settings: Validation in a population-based cohort.

AIM: To validate a novel equation to estimate weight from mid-upper arm circumference (MUAC) among children with cerebral palsy (CP) in rural Bangladesh. METHOD: Children with CP aged 2 to 18 years registered in the Bangladesh CP Register were randomly selected. Data on sociodemographics, Gross Motor Function Classification System level, and anthropometric measurements were extracted. Bland-Altman plots with a 95% agreement limit and Lin's concordance correlation coefficient with 95% confidence intervals (CI) were reported to measure agreement between observed and estimated weight. Percentage error was used to determinate the method's accuracy. RESULTS: There were 497 participants with a mean age at assessment of 9 years (SD 4 years 11 months) (47.7% female). Lin's concordance correlation coefficient between the observed and estimated weights was 0.90 (95% CI 0.89-0.92). Bland-Altman plots showed a reasonable accuracy of the equation in the study cohort. The mean percentage error of the equation was 5.04%. The average difference between observed and estimated weights was -1.02 kg (SD 5.1). The differences between observed and estimated weights were significantly greater among children with weight-for-age, height-for-age, or BMI-for-age z-scores less than or equal to -4. INTERPRETATION: It is possible to predict the weight of children with CP from MUAC with sufficient accuracy. The equation can be used for populations in low-resources and low- and middle-income countries. WHAT THIS PAPER ADDS: The equations predict the weight of children with cerebral palsy from their mid-upper arm circumference reasonably accurately. The difference between observed and estimated weights ranged between 0 kg and ± 5 kg in 81.5% of children. Sex and Gross Motor Function Classification System level did not affect the accuracy of the equations. The equations were less accurate for estimating the weight of severely undernourished children.

The Sexual and Reproductive Health of Adolescents with Cerebral Palsy in Rural Bangladesh: A Qualitative Analysis.

Adolescents with disability in the Global South have unique sexual and reproductive health (SHR) experiences and needs; however, they are rarely included in SRH discourse. This qualitative study, conducted in rural Bangladesh, used semi-structured interviews to understand how adolescents with cerebral palsy (CP) experience their SRH. Participants were recruited from the Bangladesh Cerebral Palsy Register and included 24 adolescents with CP (n = 12 female; n = 12 male) and 76 parents (n = 56 mothers, n = 17 fathers, n = 3 other relatives). Data were analyzed using reflexive thematic analysis. Findings highlighted heterogeneity among adolescents with CP including differences for adolescent men versus women. For some adolescent men with CP, sexual maturity was viewed as bringing new opportunities, whereas for other men, adolescence affirmed exclusions and some transgressed sociocultural norms as they struggled to navigate their pubescent body alongside new privacy requirements. For adolescent women with CP, sexual maturity was associated with new domestic responsibilities, silence and secrecy regarding menstruation, and increased vulnerability to sexual violence and abuse. Adolescent men and women with CP spoke about marriage as something "everybody wants," however, was deemed "impossible" for those with more impairment-related support needs. Both adolescent men and women with CP lacked access to SRH information and support. Mothers positioned providing care to their adolescent child with CP after puberty as "shameful." Our findings suggest that disability, health, and education services in rural Bangladesh need to adopt a life-course approach that incorporates the SRH of adolescents with CP. We recommend the provision of SRH education that addresses the physical, cognitive, and social needs of adolescents with CP.

A case study of an academic-stakeholder partnership: Evaluation of the '10 000 Lives' smoking cessation health promotion program.

ISSUE ADDRESSED: In Australia, smoking prevalence is higher in regional areas than in metropolitan cities; Central Queensland, a central-east district of Queensland, has substantially higher smoking rates than the state average. In November 2017, Central Queensland Public Health Unit (CQPHU) launched the '10 000 Lives' initiative to reduce the smoking prevalence in the region. The initiative partnered with local hospitals and community organisations to increase the uptake of interventions like Quitline in the region. Evaluating a program like '10 000 Lives' is critical for evidence-based health promotion practice. CQPHU partnered with a large metropolitan Australian university to evaluate the '10 000 Lives' through a scheme that provided a stipend for a Doctor of Philosophy (PhD) student. METHODS: This narrative report describes the experience of evaluating '10 000 Lives' in a collaborative partnership between CQPHU and the public health academia. RESULTS: A PhD student was recruited to join this collaboration, and both developed a program logic model and completed a process and impact evaluation. This evaluation provided an ideal 'living' case study to embed in the Master of Public Health curriculum and provided the PhD student with teaching experience delivering a demonstration of public health in practice. CONCLUSION: The collaboration project was highly successful, exemplifying research, learning and practical integration for all partners. SO WHAT?: The partnership demonstrated how universities can work with government health agencies to build practice-based evidence, and importantly give public health students authentic learning opportunities.

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

AIM: To describe the epidemiology of eye diseases among children with disability in rural Bangladesh. METHOD: We established a population-based cohort of children with disability using the key informant method. Children younger than 18 years with disability (i.e. physical, visual, hearing, speech, epilepsy) were included. We used detailed ophthalmological assessments following World Health Organization (WHO) protocols by a multidisciplinary team including an ophthalmologist, optometrist, physician, and physiotherapist. Visual impairment, blindness, and severe visual impairment (SVI) were defined by following WHO categories. RESULTS: Between October 2017 and February 2018, 1274 children were assessed (43.6% female; median [interquartile range] age 9y 10mo [6y -13y 7mo]). Overall, 6.5% (n=83) had blindness/SVI, and 5.6% (n=71) had visual impairment. In the group with blindness/SVI, 47% (n=39) had cortical blindness; of those, 79.5% (n=31) had cerebral palsy (CP). The other main anatomical sites of abnormalities in this group included lens (13.3%, n=11), cornea (10.8%, n=9), and optic nerve (9.6%, n=8). In the group with visual impairment, 90.1% (n=64) had refractive error. Overall, 83.1% (n=69) and 78.8% (n=56) of those with blindness/SVI and visual impairment had avoidable causes. Most children with blindness/SVI and visual impairment lacked access to education. INTERPRETATION: The burden of blindness/SVI/visual impairment is high among children with disability in rural Bangladesh, mostly due to avoidable causes. Overrepresentation of CP and cortical blindness in the group with blindness/SVI and refractive error in the group with visual impairment highlights the need for integration of ophthalmology assessment, eye care, and refraction services in comprehensive health care for children with disability including CP in rural Bangladesh.

Global prevalence of cerebral palsy: A systematic analysis.

AIM: To determine trends and current estimates in regional and global prevalence of cerebral palsy (CP). METHOD: A systematic analysis of data from participating CP registers/surveillance systems and population-based prevalence studies (from birth year 1995) was performed. Quality and risk of bias were assessed for both data sources. Analyses were conducted for pre-/perinatal, postnatal, neonatal, and overall CP. For each region, trends were statistically classified as increasing, decreasing, heterogeneous, or no change, and most recent prevalence estimates with 95% confidence intervals (CI) were calculated. Meta-analyses were conducted to determine current birth prevalence estimates (from birth year 2010). RESULTS: Forty-one regions from 27 countries across five continents were represented. Pre-/perinatal birth prevalence declined significantly across Europe and Australia (11 out of 14 regions), with no change in postneonatal CP. From the limited but increasing data available from regions in low- and middle-income countries (LMICs), birth prevalence for pre-/perinatal CP was as high as 3.4 per 1000 (95% CI 3.0-3.9) live births. Following meta-analyses, birth prevalence for pre-/perinatal CP in regions from high-income countries (HICs) was 1.5 per 1000 (95% CI 1.4-1.6) live births, and 1.6 per 1000 (95% CI 1.5-1.7) live births when postneonatal CP was included. INTERPRETATION: The birth prevalence estimate of CP in HICs declined to 1.6 per 1000 live births. Data available from LMICs indicated markedly higher birth prevalence. WHAT THIS PAPER ADDS: • Birth prevalence of pre-/perinatal cerebral palsy (CP) in high-income countries (HICs) is decreasing. • Current overall CP birth prevalence for HICs is 1.6 per 1000 live births. • Trends in low- and middle-income countries (LMICs) cannot currently be measured. • Current birth prevalence in LMICs is markedly higher than in HICs. • Active surveillance of CP helps to assess the impact of medical advancements and social/economic development. • Population-based data on prevalence and trends of CP are critical to inform policy.

Roles, experiences and perspectives of the stakeholders of "10,000 Lives" smoking cessation initiative in Central Queensland: Findings from an online survey during COVID-19 situation.

ISSUE ADDRESSED: The "10,000 Lives" initiative was launched in Central Queensland in November 2017 to reduce daily smoking prevalence to 9.5% by 2030 by promoting available smoking cessation interventions. One of the main strategies was to identify and engage possible stakeholders (local champions for the program) from hospitals and community organisations to increase conversations about smoking cessation and referrals to Quitline. We aimed to understand the roles, experiences and perceptions of stakeholders (possible champions for delivering smoking cessation support) of the "10,000 Lives" initiative in Central Queensland, Australia. METHODS: We conducted a mixed-method online survey during the COVID-19 situation (23 June 2020 to 22 August 2020) with a cross-section of possible stakeholders who were targeted for involvement in "10, 000 Lives" using a structured questionnaire with mostly closed-ended questions. Questions were asked regarding their roles, experiences and perceptions about smoking cessation and "10,000 Lives". RESULTS: Among the 110 respondents, 52 (47.3%) reported having provided smoking cessation support, including referral to Quitline, brief intervention and promoting existing interventions. Among them (n = 52), 31 (59.6%) were from hospitals and health services, 14 (26.9%) were from community services and three (5.8%) were from private medical practices while four of them did not report their setting. Twenty-five respondents (22.7%) self-identified as being directly involved with the "10, 000 Lives" initiative, which significantly predicted provision of smoking cessation support (OR 6.0, 95% CI: 2.1-19.8). However, a substantial proportion (63.5%) of those (n = 52) who reported delivering cessation support did not identify as contributing to "10,000 Lives". CONCLUSIONS: Stakeholders from hospitals, health services and community services are the main providers of smoking cessation support in Central Queensland. More could be done to support other stakeholders to feel confident about providing cessation support and to feel included in the initiative. SO WHAT?: Engaging with a range of stakeholders is critical for health promotion program success, to further develop the program and to ensure its sustainability. As such, funding needs to be allocated to the activities that enable this process to occur.

SARS-CoV-2 variants and environmental effects of lockdowns, masks and vaccination: a review.

The severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is continuously evolving and four variants of concern have been identified so far, including Alpha, Beta, Gamma and Delta variants. Here we review the indirect effect of preventive measures such as the implementation of lockdowns, mandatory face masks, and vaccination programs, to control the spread of the different variants of this infectious virus on the environment. We found that all these measures have a considerable environmental impact, notably on waste generation and air pollution. Waste generation is increased due to the implementation of all these preventive measures. While lockdowns decrease air pollution, unsustainable management of face mask waste and temperature-controlled supply chains of vaccination potentially increases air pollution.

Epidemiology of cerebral palsy in low- and middle-income countries: preliminary findings from an international multi-centre cerebral palsy register.

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 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.

Genomic Characterization of Recent and Historic Meningococcal Serogroup E Invasive Disease in Australia: A Case Series.

We report the recent emergence of invasive meningococcal disease due to serogroup E in Queensland, Australia, in previously healthy patients. Molecular typing revealed the genotype of these strains to be E:P1.21-7,16:F5-36:ST-1157 (cc1157); when analyzed phylogenetically, compared with international cc1157 strains, they were relatively unrelated to each other.

Congenital anomalies in children with cerebral palsy in rural Bangladesh.

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.

Epidemiology of cerebral palsy in Sumba Island, Indonesia.

AIM: To define the epidemiology, clinical characteristics, and rehabilitation status of children with cerebral palsy (CP) in Sumba Island, Indonesia. METHOD: A community-based key informant method survey among children (aged <18y) with CP was conducted between March and August 2017. Children with suspected CP underwent detailed neurodevelopmental assessment by a multidisciplinary medical team. Socio-demographic characteristics, aetiology, motor type, motor severity, associated impairments, educational, and rehabilitation status were documented. RESULTS: There were 130 children with clinically confirmed CP. The mean age at assessment was 8 years 11 months and 43.8% (n=57) of the children were female. The mean age at CP diagnosis was 6 years 5 months. Of these children, 46.9% (n=61) had post-neonatally acquired CP, most frequently because of vaccine-preventable infectious encephalopathy (73.8%, n=45). In total, 80.8% (n=105) had a predominantly spastic motor type of CP and 83.8% (n=109) were classified in Gross Motor Functional Classification System levels III to V. A total of 77.7% (n=101) had at least one associated impairment (speech 77.5%, intellectual 29.2%, visual 13.8%, hearing 20.0%, and epilepsy 13.5%). And 66.2% (n=86) had never received rehabilitation services. INTERPRETATION: Post-neonatally acquired CP was common in this setting. Addressing preventable post-neonatally acquired risk factors for CP should be a public health priority. Earlier identification and diagnosis of CP would also provide new opportunities for early intervention and targeted rehabilitation services.

What predicts the proxy-reported health-related quality of life of adolescents with cerebral palsy in Bangladesh?

BACKGROUND: The health-related quality of life (HRQoL) of adolescents with CP in low and middle-income countries is often poor, as is the case in Bangladesh. This exploratory study examined what factors predict the proxy-reported HRQoL of adolescents with CP in rural Bangladesh, a typical low- and middle-income country (LMIC). METHODS: Adolescents with CP (10 to 18y) were identified using the Bangladesh Cerebral Palsy Register. HRQoL was assessed using the Cerebral Palsy Quality of Life-Teens proxy-report questionnaire (CPQoL-Teens), adolescent mental health using the Strengths and Difficulty Questionnaire (SDQ) and caregiver mental health using the Depression, Anxiety and Stress Scale (DASS-21). Theoretical and statistical interests (i.e. bivariate analysis, p < 0.05) identified potential predictors which were entered into hierarchical multiple linear regression (HMLR) models in order of clinical significance; HMLR related adolescent clinical characteristics, adolescent and caregiver mental health and proxies of socioeconomic status to CPQoL-Teens dimensions. RESULTS: One hundred fifty-four adolescents with CP (mean age 15y 1mo, SD 1y 8mo, female 31.2%) participated in this study. Twenty-four factors were identified to explore for relationship to adolescent proxy-reported HRQoL. Fifteen of the factors correlated to one or more CPQoL-Teens dimension; strongest correlation was between 'feelings about functioning' and motor impairment (r = 0.545). Nine were predictive of CPQoL-Teens dimensions; adolescent sex, school attendance, severity of motor impairment, hearing and speech impairment, mother's education, primary caregiver depression and stress, and having a sanitary latrine at home resulting in score changes of between 0.79 (95% CI 0.24 to 1.35) to 35.1 (95% CI 6.03 to 64.22). CONCLUSIONS: Many of the factors predicting the proxy-reported HRQoL of adolescents with CP are amenable to intervention, and have the potential to improve adolescent wellbeing. Several determinants are priorities of the sustainable development goals (SDGs); these findings should inform resource prioritization to improve the wellbeing of adolescents with CP in Bangladesh and other LMICs.

A quality of life questionnaire for adolescents with cerebral palsy: psychometric properties of the Bengali CPQoL-teens.

BACKGROUND: Quality of life (QoL) and health-related quality of life (HRQoL) measurement in low and middle-income countries of people with cerebral palsy (CP), the major cause of childhood physical disability, is essential to assess the impact of interventions and inform policies that best improve people's lives. The purpose of this study was to cross-culturally translate and psychometrically validate the Cerebral Palsy Quality of Life-Teens (CPQoL-Teens) self- and proxy-report questionnaires for application with adolescents with CP in Bangladesh. METHOD: The CPQoL-Teens questionnaires were translated to Bengali using forward and backwards cross-cultural translation protocols. The questionnaires were interviewer administered to adolescents and their primary caregivers, identified through the Bangladesh Cerebral Palsy Register. Feasibility, sensitivity, internal consistency, content, concurrent and construct validity were assessed. RESULTS: One hundred fifty four adolescents with CP (10 to 18y; mean 15y 1mo SD 1y 8mo; 31.2% female) participated. Feasibility, sensitivity and internal consistency of both self- and proxy-report questionnaires was excellent; nil missing scores except 'school wellbeing' which was associated with non-school attendance (48.4 to 74.7%); floor and ceiling effect ≤13.6%; Cronbach's alpha 0.77 to 0.94. Instrument validity was good; confirmatory factor analysis reflected five of the seven original instrument dimensions. CPQoL-Teens correlated to Kidscreen-27 on most dimensions (r = 0.176 to 0.693, p < 0.05); minimal difference in known groups was observed by mental health status (p < 0.05) although could be accounted for by homogeneity of mental health problems in the sample. CONCLUSION: The CPQoL-Teens self- and proxy report questionnaires successfully translated to Bengali and showed excellent feasibility and strong psychometric properties confirming suitability to assess indicators of HRQoL among adolescents with CP in Bangladesh.

Epidemiology of cerebral palsy in Bangladesh: a population-based surveillance study.

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.

EPIDEMIOLOGÍA DE LA PARÁLISIS CEREBRAL EN BANGLADESH: UN ESTUDIO DE VIGILANCIA BASADO EN LA POBLACIÓN: OBJETIVO: Examinar la prevalencia, las características clínicas y los factores de riesgo de la parálisis cerebral (PC) en niños en Bangladesh. MÉTODO: El Registro de PC (BCPR siglas en ingles) de Bangladesh es una base de datos de vigilancia basada en la población de niños con PC, de un área geográficamente definida, en Bangladesh. Los casos se definieron siguiendo los criterios de vigilancia de PC en Europa y los criterios del registro de PC australiano, teniendo en cuenta las evaluaciones clínicas y la identificación por el método del informante clave. RESULTADOS: En total, se identificaron 726 niños con PC entre enero del 2015 y diciembre del 2016. La edad media fue de 7 años y 7 meses (desviación estándar [DE] 4ª 6m; rango: 4,8m-18a; mediana 7a 1,2m; 61,8% masculino, 38,2 % femenino). La edad promedio en el diagnóstico de PC fue de 5 años y 2 meses (DE 3.8). La prevalencia observada fue de 3,4 por cada 1.000 niños (intervalo de confianza [IC] del 95%: 3,2-3,7), resultando en un número estimado de 233.514 niños con PC (IC del 95% 219 778-254 118) en Bangladesh. La mayoría (79.6%) tenía PC espástica. En total, el 79.6% de los niños con PC tenían al menos un impedimento asociado (habla 67.6%, intelectual 39.0%, epilepsia 23.7%, visual 10.2% y audición 10.2%). En total, el 78.2% nunca recibió rehabilitación. INTERPRETACIÓN: En Bangladesh, el impacto de PC es alto y el diagnóstico se retrasa sustancialmente, lo que limita las oportunidades de intervención temprana. Hay una falta de servicios disponibles y la mayoría de los niños tenían factores de riesgo prevenibles.

EPIDEMIOLOGIA DA PARALISIA CEREBRAL EM BANGLADESH: UM ESTUDO DE VIGILÂNCIA COM BASE POPULACIONAL: OBJETIVO: Examinar a prevalência, características clínicas, e fatores de risco para paralisia cerebral (PC) em crianças de Bangladesh. MÉTODO: O Registro de PC de Bangladesh (RPCB) é uma base de dados populacional em andamento para vigilância de crianças com PC de uma área geograficamente definida de Bangladesh. Os casos foram definidos com base nos critérios do Vigilância da PC na Europa e do Registro Australiano de PC após avaliação clínica e identificação pelo método pelo informante principal RESULTADOS: No total, 726 crianças com PC foram identificadas entre Janeiro 2015 e Dezembro 2016. A média de idade foi 7 anos e 7 meses (desvio padrão [DP] 4a 6m; variação: 4,8m-18a; mediana 7a 1,2m; 61,8% do sexo masculino, 38,2% do sexo feminino). A média de idade no momento do diagnóstic de PC foi de 5 anos e 2 meses (DP 3,8). A prevalência observada foi 3,4 a cada 1000 crianças (intervalo de confiança [IC] a 95% 3,2-3,7), resultando em uma estimativa de 233.514 crianças (IC 95% 219.778-254.118) com PC em Bangladesh. A maioria (79,6%) tinha PC espástica. No total, 79,6% das crianças com PC tinha pelo menos uma deficiência associada (linguagem 67,6%, intelectual 39,0%, epilepsia 23,7%, visual 10,2%, e auditiva 10,2%). No total, 78,2% nunca recebeu reabilitação. INTERPRETAÇÃO: Em Bangladesh, o peso da PC é alto, e o diagnóstico é substancialmente tardio, limitando as oportunidades de intervenção precoce. Há carência de serviços disponíveis, e a maioria das crianças apresentou fatores de risco preveníveis.

Mortality in children with cerebral palsy in rural Bangladesh: a population-based surveillance study.

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.

Cross-cultural validation of the Bengali version KIDSCREEN-27 quality of life questionnaire.

BACKGROUND: Measuring the health-related quality of life (HRQoL) of adolescents, including those with cerebral palsy (CP) (the major cause of childhood physical disability worldwide) in Bangladesh is pertinent although there is a dearth of validated instruments for assessing this concept. For application in a case-control study comparing HRQoL between adolescents with CP and peers without disability in Bangladesh (a typical low- and middle-income country) we cross-culturally translated and psychometrically tested KIDSCREEN-27. METHODS: KIDSCREEN-27 was translated to Bengali using forward and backwards translation protocol and interviewer administered to adolescents with CP and their age and sex matched peers without disability. Primary caregivers were included for proxy-report. Sociodeomgraphic characterists and clinical information were extracted from the Bangladesh Cerebral Palsy Register (BCPR) and adolescent mental health was assessed using the Bengali version Strenghts and Difficulties Questionnaire (SDQ). Feasibility, floor and ceiling effect, internal consistency, content and construct validity of KIDSCREEN-27 were tested. RESULTS: Feasibility, floor and ceiling effect and internal consistency of KIDSCREEN-27 was good for both self- and proxy-report questionnaires; nil missing scores except 'school environment' (11.0% to 74.7%) which correlated to rates of non-school attendance; floor and ceiling effect ≤10.4% except 'peers and social support' 23.4%; Cronbach's alpha 0.67 to 0.91. Instrument validity was strong; factor analysis reflected original instrument dimensions within one to three factors and difference in known groups was observed by CP and adolescent mental health (p < 0.05). CONCLUSION: KIDSCREEN-27 successfully translated to Bengali and both the self and proxy-report questionnaires showed good psychometric properties indicating suitability for case-control assessment of HRQoL between adolescents with CP and peers without disability in Bangladesh.

Hip dysplasia among children with spastic cerebral palsy in rural Bangladesh.

BACKGROUND: Hip dysplasia is common among children with cerebral palsy (CP), particularly in spastic CP. It can result in pain, reduced function and quality of life. However, the burden of hip dysplasia among children with CP in llow-and middle-income countries (LMICs) like Bangladesh is unknown. We aimed to define the burden of hip dysplasia among children with spastic CP in Bangladesh. METHODS: This study includes a subset of the Bangladesh CP Register (BCPR) study cohort who were registered between January and March 2015. The BCPR is a population-based surveillance of children with CP (aged < 18 years) operating in a northern sub-district (Shahjadpur; child population ~ 226,114) of Bangladesh. Community-based key informant's method (KIM) survey conducted to identify children with CP in the surveillance area. A diagnosis of CP was made based on clinical history and examination by the study physicians and physiotherapist. Study participants had an antero-posterior (AP) X-ray of their pelvis. The degree of subluxation was assessed by calculating the migration percentage (MP). RESULTS: During the study period, 196 children with CP were registered, 144 had spastic CP. 40 children with spastic CP (80 hips) had pelvic X-Rays (mean age 9.4 years, range 4.0-18.0 years) and 32.5% were female. Gross Motor Function Classification System (GMFCS) showed 37.5% (n = 15) with GMFCS level I-II and 62.5% (n = 25) with GMFCS level III-V. Twenty percent (n = 8) of the children had hip subluxation (MP: 33-80%). Osteopenic changes were found in 42.5% (n = 17) children. CONCLUSIONS: To the best of our knowledge this is one of the first studies exploring hip dysplasia among children with spastic CP in Bangladesh. Our findings reflect that hip dysplasia is common among children with spastic CP. Introduction of hip surveillance programmes is imperative for prevention of secondary complications, reduced function and poor quality of life among these children.