Browsing by Author "Andrews, Carin"

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    Akwenda Intervention Programme for Children and Youth with Cerebral Palsy in a Low-Resource Setting in Sub-Saharan Africa: Protocol for a Quasi-Randomised Controlled Study
    (BMJ open, 2021) Saloojee, Gillian; Ekwan, Francis; Andrews, Carin; Damiano, Diane L; Kakooza-Mwesige, Angelina; Forssberg, Hans
    Cerebral palsy (CP) is the most common childhood-onset motor disorder accompanied by associated impairments, placing a heavy burden on families and health systems. Most children with CP live in low/middle-income countries with little access to rehabilitation services. This study will evaluate the Akwenda CP programme, a multidimensional intervention designed for low-resource settings and aiming at improving: (1) participation, motor function and daily activities for children with CP; (2) quality of life, stress and knowledge for caregivers; and (3) knowledge and attitudes towards children with CP in the communities.This quasi-randomised controlled clinical study will recruit children and youth with CP aged 2–23 years in a rural area of Uganda. Children will be allocated to one of two groups with at least 44 children in each group. Groups will be matched for age, sex and motor impairment. The intervention arm will receive a comprehensive, multidimensional programme over a period of 11 months comprising (1) caregiver-led training workshops, (2) therapist-led practical group sessions, (3) provision of technical assistive devices, (4) goal-directed training and (5) community communication and advocacy. The other group will receive usual care. The outcome of the intervention will be assessed before and after the intervention and will be measured at three levels: (1) child, (2) caregiver and (3) community. Standard analysis methods for randomised controlled trial will be used to compare groups. Retention of effects will be examined at 12-month follow-up.The study has been approved by the Uganda National Council for Science and Technology (SS 5173) and registered in accordance with WHO and ICMJE standards. Written informed consent will be obtained from caregivers. Results will be disseminated among participants and stakeholders through public engagement events, scientific reports and conference presentations.
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    Functional Development in Children with Cerebral Palsy in Uganda: Population-Based Longitudinal Cohort Study
    (Developmental Medicine & Child Neurology, 2022) Andrews, Carin; Namaganda, Lukia; Eliasson, Ann Christin; Mwesige, Angelina Kakooza; Forssberg, Hans
    To follow the functional development of a population-based cohort of children with cerebral palsy (CP) in rural Uganda and compare their development with the developmental trajectories of children from high-income countries (HIC).Eighty-one children (33 females, 48 males) aged 2 to 17 years (mean 8y 6mo, SD 4y 6mo) with CP were initially assessed in 2015 and then 4 years later using the 66-item Gross Motor Function Measure (GMFM-66), Pediatric Evaluation of Disability Inventory, Ugandan version (PEDI-UG), and functional classification systems. We calculated actual and reference scores (level of deviation from the developmental trajectories in HIC). A Wilcoxon signed-rank test was used for statistical analyses.Children and young people with CP in Uganda exhibited no differences in scores between the first and second assessments for the GMFM-66 and PEDI-UG mobility skills, whereas they exhibited increased PEDI-UG social function (p<0.001) and self-care skills scores (p<0.001). Reference scores were more negative at the second assessment than at the first for the GMFM-66 (p=0.002) and PEDI-UG mobility (p=0.036) but not for PEDI-UG self-care. The increased difference in reference scores over the 4 years was primarily driven by younger children (2–5y) and children with milder impairments.The increased difference in reference scores between assessments suggests that children with CP in Uganda develop motor skills at a slower rate than peers in HIC. Limited access to health care and rehabilitation likely contributed to the lower scores and slower rate of development.
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    Impairments, Functional Limitations, and Access to Services And Education for Children with Cerebral Palsy in Uganda: A Population-Based Study
    (Developmental Medicine & Child Neurology, 2020) Andrews, Carin; Mwesige, Angelina Kakooza; Almeida, Rita; Peterson, Stefan Swartling; Mangen, Fred Wabwire; Eliasson, Ann-Christin; Forssberg, Hans
    To describe the functional limitations and associated impairments of children with cerebral palsy (CP) in rural Uganda, and care-seeking behaviour and access to assistive devices and education.Ninety-seven children with CP (42 females, 55 males; age range 2–17y) were identified in a three-stage population-based screening with subsequent medical examinations and functional assessments. Information on school and access to care was collected using questionnaires. The data were compared with Swedish and Australian cohorts of children with CP. We used the χ2 test and linear regression models to analyse differences between groups.Younger children were more severely impaired than older children. Two-fifths of the children had severe impairments in communication, about half had intellectual disability, and one third had seizures. Of 37 non-walking children, three had wheelchairs and none had walkers. No children had assistive devices for hearing, seeing, or communication. Care-seeking was low relating to lack of knowledge, insufficient finances, and ‘lost hope'. One-third of the children attended school. Ugandan children exhibited lower developmental trajectories of mobility and self-care than a Swedish cohort.The needs for children with CP in rural Uganda are not met, illustrated by low care-seeking, low access to assistive devices, and low school attendance. A lack of rehabilitation and stimulation probably contribute to the poor development of mobility and self-care skills. There is a need to develop and enhance locally available and affordable interventions for children with CP in Uganda.
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    Important Report on Cerebral Palsy in Bangladesh: But Different Findings Compared with other Countries Need Further Exploration
    (Developmental Medicine & Child Neurology, 2019) Andrews, Carin; Mwesige, Angelina Kakooza; Eliasson, Ann-Christin; Forssberg, Hans
    Data from a population-based study of cerebral palsy (CP) in Bangladesh1 could help bridge the knowledge gap regarding developmental disabilities in low- and middle-income countries (LMICs). Prevalence data are particularly crucial for developing appropriate health, social, and education services, and the lack of rigorous population-based studies in LMICs has severely hampered both national and international programmes and likely contributed to widespread neglect of children with disabilities. Despite attempts to bridge this critical gap using sophisticated modelling as described in a recent Global Burden of Disease report regarding developmental disabilities, the ‘true’ global burden and worldwide distribution of children living with disabilities remain unknown due to poor primary data sources.2 It was therefore encouraging to read the population-based study by Khandaker et al.1 The authors used a key informant methodology in a two-stage process in which community-based key informants identified children with suspected CP and referred them to local day camps. There, a team comprised of a paediatrician, a physiotherapist, and a counsellor examined the children to confirm the CP diagnosis and assess them for functional limitations and associated impairments. We recently performed a population-based study of CP in Uganda using a three-stage screening process.3 As these are the first population-based studies of CP in LMICs using contemporary classification and assessment methods, it would be interesting to compare the results to identify commonalities that could be used to construct a global database and also explore differences to identify geographic variations and aid in developing customized preventions and interventions. Both studies reported a higher prevalence of CP (3.4/1000 [Bangladesh] and 3.1/1000 [Uganda after triangulation]) relative to high-income countries (HICs) (2/1000). In the Ugandan study, the prevalence changed with age, declining from 4/1000 at 2 to 7 years of age to approximately 2/1000 at 8 to 17 years of age, driven by fewer older severely affected children in Gross Motor Function Classification System (GMFCS) levels IV to V. Variation with age was not observed in the Bangladesh cohort, which included children as young as 4.8 months, introducing uncertainty regarding the prevalence data, as it is difficult to diagnose CP at this young age. However, the high death rate (20/1000) during the 2-year study supported a similar age-associated trend in the Bangladesh cohort; most of the deceased children were stunted and were in GMFCS levels III to V. Collectively, these studies support earlier speculation that CP is more common in LMICs, thus constituting a significant global burden. Both studies also suggest that mortality is high among severely affected children. The studies differed in terms of risk factors. Children born preterm (<37 gestational weeks) constituted 19% of the Bangladesh cohort, approximately half the reported percentage in HICs. This is in stark contrast to the Ugandan cohort, only 2% of which was born preterm. This discrepancy likely reflects the state of maternal and neonatal care, as very few infants born preterm survive in rural Uganda. Presumably, Bangladesh provides better services, enabling more children born preterm to survive. Another difference is the proportion of post-neonatal CP. Although the Bangladesh study reported 6% post-neonatal cases (like the 5% reported in HICs), the Ugandan study reported 25%. The probable cause for the high number of post-neonatal cases in Ugandan children was cerebral malaria, which is endemic in the region. In both countries, however, events that could harm the brain of term infants during the perinatal period were common. The Bangladesh and the Ugandan cohorts differed considerably regarding disease severity, as classified by the GMFCS and Manual Ability Classification System. To illustrate these differences, we compiled a table with data from both cohorts and included distributions from several population-based cohorts in HICs (Table SI, online supporting information). The Ugandan cohort was divided into two age groups due to a dramatic decline in the percentage of severely affected children (GMFCS levels IV–V) at older ages. There were fewer mildly affected children in the Bangladesh cohort compared to both Ugandan cohorts. This could be due in part to differences in aetiology; for example, the post-neonatal patients in Uganda exhibited less impairment (GMFCS levels I–II, 75%). Another possibility could be differences in methodology that precluded identifying all mild cases in the Bangladesh study. The three-stage screening in Uganda was performed at a Health and Demographic Surveillance System facility where each child is registered during annual surveys. This means that every household was screened by well-trained field workers during the first stage. Notably, in the Bangladesh study, key informants did not visit every child but instead used their knowledge, contacts, and community engagement to disseminate information and invite families with children suspected as having CP. In the key informant methodology study, key informants identified 6.2/1000 physically impaired children, whereas a simultaneous household survey identified 8/1000 children, suggesting that key informants missed 23% of physically impaired children.4 Whether those missed children had mild or severe impairments was not reported. Notably, the proportion of milder cases was considerably higher in HICs (Table SI) than in Bangladesh, like the Ugandan cohort, supporting the hypothesis that milder cases were missed in Bangladesh. The prevalence of associated impairments also differed between the two cohorts (Table SI). Seizures were less prevalent in the Bangladesh cohort than in either Ugandan age group, with similar differences in the prevalence of intellectual disabilities. Hearing and vision impairments were also less prevalent in the Bangladesh cohort. Considering the reported positive correlation between severe GMFCS classification and associated impairments in HICs,5 the finding of fewer associated impairments in the Bangladesh cohort is contradictory, given that this cohort had proportionally more severely affected children. Equally puzzling is the observation that Bangladesh children exhibited fewer associated impairments than children in HICs. To better understand the relationship between geographic characteristics and CP, the reasons for these differences must be elucidated. In conclusion, the Bangladesh population-based study of CP represents an important step toward obtaining useful information about the prevalence, functional limitations, associated impairments, and risk factors in LMICs. The study clearly shows that we cannot simply extrapolate data from HICs – or from one LMIC to another – but must also consider economic, cultural, and geographic differences. Comparisons with the Ugandan study also raise questions regarding how much of the observed differences are real or due to differences in screening and assessment methods.
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    Prevalence of Cerebral Palsy in Uganda: A Population-Based Study
    (The Lancet Global Health, 2017) Mwesige, Angelina Kakooza; Andrews, Carin; Peterson, Stefan; Mangen, Fred Wabwire; Eliasson, Ann Christin; Forssberg, Hans
    Few population-based studies of cerebral palsy have been done in low-income and middle-income countries. We aimed to examine cerebral palsy prevalence and subtypes, functional impairments, and presumed time of injury in children in Uganda.In this population-based study, we used a nested, three-stage, cross-sectional method (Iganga-Mayuge Health and Demographic Surveillance System [HDSS]) to screen for cerebral palsy in children aged 2–17 years in a rural eastern Uganda district. A specialist team confirmed the diagnosis and determined the subtype, motor function (according to the Gross Motor Function Classification System [GMFCS]), and possible time of brain injury for each child. Triangulation and interviews with key village informants were used to identify additional cases of suspected cerebral palsy. We estimated crude and adjusted cerebral palsy prevalence. We did χ2 analyses to examine differences between the group screened at stage 1 and the entire population and regression analyses to investigate associations between the number of cases and age, GMFCS level, subtype, and time of injury.We used data from the March 1, 2015, to June 30, 2015, surveillance round of the Iganga-Mayuge HDSS. 31 756 children were screened for cerebral palsy, which was confirmed in 86 (19%) of 442 children who screened positive in the first screening stage. The crude cerebral palsy prevalence was 2·7 (95% CI 2·2–3·3) per 1000 children, and prevalence increased to 2·9 (2·4–3·6) per 1000 children after adjustment for attrition. The prevalence was lower in older (8–17 years) than in younger (<8 years) children. Triangulation added 11 children to the cohort. Spastic unilateral cerebral palsy was the most common subtype (45 [46%] of 97 children) followed by bilateral cerebral palsy (39 [40%] of 97 children). 14 (27%) of 51 children aged 2–7 years had severe cerebral palsy (GMFCS levels 4–5) compared with only five (12%) of 42 children aged 8–17 years. Few children (two [2%] of 97) diagnosed with cerebral palsy were born preterm. Post-neonatal events were the probable cause of cerebral palsy in 24 (25%) of 97 children.Cerebral palsy prevalence was higher in rural Uganda than in high-income countries (HICs), where prevalence is about 1·8–2·3 cases per 1000 children. Children younger than 8 years were more likely to have severe cerebral palsy than older children. Fewer older children than younger children with cerebral palsy suggested a high mortality in severely affected children. The small number of preterm-born children probably resulted from low preterm survival. About five times more children with post-neonatal cerebral palsy in Uganda than in HICs suggested that cerebral malaria and seizures were prevalent risk factors in this population.