Functioning and activity outcomes of the Akwenda Intervention Program for children and young adults with cerebral palsy in Uganda: A cluster-randomized trial.

AIM: To evaluate the efficacy of the Akwenda Intervention Program on motor, self-care, and social function of children and young people with cerebral palsy (CP). METHOD: This was a cluster-randomized, controlled, single-blinded, intervention study of 100 participants with CP (2-23 years; 52 males) in rural eastern Uganda. Half were allocated to the intervention program, the remainder served as waitlist controls. Gross Motor Function Measure-66 (GMFM-66) and the Ugandan version of Pediatric Evaluation of Disability Inventory (PEDI-UG) were collected before group allocation and after intervention. General linear models and t-tests were used to compare changes within and between groups. Cohen's d estimated the effect size of group differences. Change scores were evaluated by age and mobility subgroups. RESULTS: Significant group by time interactions were found for GMFM-66 (p =0.003) and PEDI-UG outcomes (p <0.001), except mobility, with the intervention group demonstrating greater changes. Both groups increased their scores on the GMFM-66 and child PEDI-UG, while only the intervention group had significant increases in caregiver assistance scores and across all age and mobility subgroups. Cohen's d showed large effect sizes (d >0.8) of differences for PEDI-UG outcomes except mobility. INTERPRETATION: The Akwenda Intervention Program had a large positive impact on functioning and activity across age and mobility levels.

Participation of children and young people with cerebral palsy in activities of daily living in rural Uganda.

AIM: To compare the participation attendance and involvement of children and young people with and without cerebral palsy (CP) in a low-resource area of Uganda. METHOD: Eighty-two children and young people with CP aged 6 to 22 years (49 males, 33 females) and 81 age- and sex-matched peers without CP (6 to 22 years; 48 males, 33 females) participated in this population-based, cross-sectional study. Data on attendance and involvement in 20 home and community activities were obtained using Picture My Participation, an instrument intended to measure participation in children with disabilities, particularly in low- and middle-income countries. Non-parametric statistical methods were used to assess between-group differences. Effect size estimates were calculated. RESULTS: Pooled attendance across all activities was lower in children and young people with CP than in children and young people without CP (p < 0.001) and for each activity item (p = 0.004 to p < 0.001). The effect sizes for each activity were 0.2 to 0.7. Between-group differences were larger for community activities than for home activities. Pooled involvement across all activities was less in the group with CP (p < 0.001) and for each activity (p = 0.014 to p < 0.001). The effect sizes for each activity were 0.2 to 0.5. Children and young people in Gross Motor Function Classification System (GMFCS) levels I and II had higher attendance (p < 0.001) and involvement (p = 0.023) than those in GMFCS levels III to V. INTERPRETATION: Participation of young people living with CP in Uganda was restricted, especially for community activities. There is a need to identify context-specific participation barriers and develop strategies to overcome them. WHAT THIS PAPER ADDS: Children and young people with cerebral palsy (CP) attended all activities less than their peers without CP. Differences in attendance were larger for community-based activities than home activities. When attending activities, children and young people with CP were less involved than their peers. Children and young people with milder impairments attended less frequently than their peers without CP. Children and young people with milder impairments attended more frequently than their peers with severe impairments.

Validity and test-retest reliability of the Ugandan version of the Pediatric Evaluation of Disability Inventory (PEDI-UG) in children and youth with cerebral palsy.

BACKGROUND: Validity of the Ugandan version of the Pediatric Evaluation of Disability Inventory (PEDI-UG) was previously investigated on typically developing children. This study aimed to investigate the validity, test-retest reliability and minimal detectable change (MDC) of the PEDI-UG in children and youth (C&Y) with cerebral palsy (CP). METHOD: A cross-sectional study design with 118 C&Y with CP (44.7% girls) aged 10 months-22.5 years were included in the study; 37 of them completed the PEDI-UG twice to investigate test-retest reliability, determined by calculating the intraclass correlation coefficient (ICC). Additionally, data from 249 typically developing children were used for differential item functioning (DIF) analysis. The validity of the PEDI-UG was investigated by Rasch analysis. The Kruskal-Wallis test and Spearman's correlation coefficient were calculated to investigate associations between PEDI-UG scores and external classification systems. RESULTS: The principal component analysis of residuals indicated unidimensionality in all domains. The ICC values were excellent (0.98-0.99), and the MDCs were less than 6 and 13 (on a 0-100 scale) for the functional skills and caregiver assistance parts, respectively. The four-category caregiver assistance rating scale fulfilled the criteria for the analysis of rating scale functioning. In total, 78 of 189 items in the functional skills domain and two items in the caregiver assistance domain demonstrated DIF between C&Y with CP and TD children. The Kruskal-Wallis test (p < 0.05) and Spearman's correlation (coefficients of -0.93 to -0.78) supported the validity of PEDI-UG. CONCLUSION: The current diagnose-specific version of PEDI-UG demonstrates evidence for validity as a measure of ability in C&Y with CP in Uganda and other similar settings, being a promising tool for use in clinical practice and research. Conversion tables and MDC values are provided to facilitate clinical adoption of the measure.

Functional development in children with cerebral palsy in Uganda: population-based longitudinal cohort study.

AIM: 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). METHOD: 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. RESULTS: 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. INTERPRETATION: 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.

Impairments, functional limitations, and access to services and education for children with cerebral palsy in Uganda: a population-based study.

AIM: 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. METHOD: 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. RESULTS: 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. INTERPRETATION: 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. WHAT THIS PAPER ADDS: Development of mobility and self-care skills is lower in Ugandan than Swedish children with cerebral palsy (CP). Older children in Uganda with CP are less impaired than younger children. Untreated seizures and impairments of communication and intellect are common. Access to health services, assistive devices, and education is low. Caregivers lack knowledge and finances to seek care and often lose hope of their child improving.

Determinants of consistent condom use among female sex workers in Savannakhet, Lao PDR.

BACKGROUND: Female sex workers (FSWs) are a high-risk population for HIV. Correct and consistent use of condoms is the most effective measure for reducing transmission of HIV. Lao PDR is a low HIV-prevalence country, but FSWs have a relatively high HIV prevalence. To be able to make recommendations for condom promotion interventions in Lao PDR it is important to know more about the context specific situation. This study looked at reasons for and associated factors of consistent condom use among FSWs. METHODS: A cross-sectional survey among 258 FSWs in Kaysone Phomvihan district in Savannakhet province was performed. RESULTS: Almost all FSWs had enough condoms (94%), condoms always available (100%) and could always afford condoms (92%). Consistent condom use was 97% with non-regular partners and 60% with regular partners. Almost all respondents (95%) had received information about condoms from the drop-in centre. Stated reasons for consistent condom use were prevention of HIV (94%), STIs (88%) and pregnancy (87%). Most reasons for inconsistent condom use were related to partners not wanting to use condoms because of reduced sexual pleasure. Some FSWs reported that they were physically abused and forced not to use condoms. Shorter time in sex work, higher education and FSW not having regular partners were significantly associated with consistent condom use. CONCLUSIONS: Consistent condom use was very high with non-regular partners, but less frequent with regular partners. The main reason for inconsistent condom use was that the partner did not want to use a condom. Associated factors for consistent condom use were not having regular partners, higher education and shorter time in sex work. Condom promotion programs should include both FSWs and their partners and female condoms should be included in condom intervention efforts. Future studies should investigate the validity of self-reported sexual practices, partners' reasons for inconsistent condom use, risk of violence in sex work and why shorter time in sex work is associated with consistent condom use.

A Goal-Directed Program for Wheelchair Use for Children and Young People with Cerebral Palsy in Uganda: An Explorative Intervention Study.

In this exploratory study, we investigate whether goal-directed intervention for wheelchairs can increase the activities of daily living for children and young people with cerebral palsy (CP) when implemented in rural Uganda. Thirty-two children and young people with CP (aged 3-18 years) participated in a home-visit intervention program, which included donating wheelchairs and setting individual goals. Goal achievement, frequency of wheelchair use, condition of wheelchairs, and caregivers' perspectives were collected by interviews at 6-10 month after the start of intervention and the after three years. Our result show that most wheelchairs were in good condition and frequently used after 6-10 month with 83% goal achievement (132/158 goals; mean 4.3 (range 0-7). The caregivers reported several advantages (e.g., the child being happier) and few disadvantages (e.g., poor design and durability). At the three-year follow-up, only eleven wheelchairs were still used by 23 available participants (seven deceased and two moved). The children achieved 60% of their goals (32/53 goals mean 2.9; range 1-5). This demonstrates that the goal-directed intervention program for wheelchairs can be successfully implemented in a low-income setting with a high rate of goal achievement and frequent wheelchair use, facilitating participation. However, maintenance services are crucial to obtain sustainable results.

Nutritional status and growth of children and adolescents with and without cerebral palsy in eastern Uganda: A longitudinal comparative analysis.

There is a need to understand the growth and burden of malnutrition in children with cerebral palsy (CP) in order to design appropriate inclusive nutrition strategies. We compared the nutritional status and four-year longitudinal growth of a population-based cohort of children and adolescents (C&A) with CP (n = 97; 2-17 years; 55/42 M/F), and an age and sex matched group without CP (n = 91; 2-17y; 50/41 M/F) in rural Uganda. The cohorts were assessed in 2015 and 2019 for weight, height, social demographic characteristics, and feeding related factors. Nutritional status was determined using the World Health Organization (WHO) Z-scores. Wilcoxon sign rank and Mann-Whitney tests were used to test within and between group differences. Multivariable linear regression was used to determine predictors of the change in growth. Approximately two thirds (62/97 (64%)) of C&A with CP were malnourished (with <-2SD in any of the WHO Z-scores), especially those with feeding difficulties (OR = 2.65; P = 0.032), and those who needed to be fed (OR = 3.8; P = 0.019). Both the CP and non-CP groups deviated negatively from the WHO reference growth curve for height, with a significantly slower growth in the CP group (median change score of height-for-age Z score (HAZ) between assessments = -0.80(-1.56, 0.31), p<0.01), than the non-CP group (median HAZ change score = -0.27(-0.92,0.34, p = 0.034). There was a statistically significant group difference in the median HAZ change score between the CP and non-CP groups (z = -2.21, p = 0.026). Severity of motor impairment measured by the Gross Motor Function Classification System (GMFCS-level) correlated negatively (r = -1.37,95%CI -2.67, -0.08) with the change in HAZ scores among the CP group. Children and adolescents with severe motor impairments exhibit an increased risk of malnutrition and growth retardation compared to their age matched peers without CP, which underscores the need to develop inclusive community-based nutrition strategies for children with cerebral palsy.

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.

INTRODUCTION: 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. METHODS: 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. ETHICS AND DISSEMINATION: 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. TRIAL REGISTRATION NUMBER: Pan African Clinical Trials Registry (PACTR202011738099314) Pre-results.

Excessive premature mortality among children with cerebral palsy in rural Uganda: A longitudinal, population-based study.

BACKGROUND: Studies from high-income countries reported reduced life expectancy in children with cerebral palsy (CP), while no population-based study has evaluated mortality of children with CP in sub-Saharan Africa. This study aimed to estimate the mortality rate (MR) of children with CP in a rural region of Uganda and identify risk factors and causes of death (CODs). METHODS AND FINDINGS: This population-based, longitudinal cohort study was based on data from Iganga-Mayuge Health and Demographic Surveillance System in eastern Uganda. We identified 97 children (aged 2-17 years) with CP in 2015, whom we followed to 2019. They were compared with an age-matched cohort from the general population (n = 41 319). MRs, MR ratios (MRRs), hazard ratios (HRs), and immediate CODs were determined. MR was 3952 per 100 000 person years (95% CI 2212-6519) in children with CP and 137 per 100 000 person years (95% CI 117-159) in the general population. Standardized MRR was 25·3 in the CP cohort, compared with the general population. In children with CP, risk of death was higher in those with severe gross motor impairments than in those with milder impairments (HR 6·8; p = 0·007) and in those with severe malnutrition than in those less malnourished (HR = 3·7; p = 0·052). MR was higher in females in the CP cohort, with a higher MRR in females (53·0; 95% CI 26·4-106·3) than in males (16·3; 95% CI 7·2-37·2). Age had no significant effect on MR in the CP cohort, but MRR was higher at 10-18 years (39·6; 95% CI 14·2-110·0) than at 2-6 years (21·0; 95% CI 10·2-43·2). Anaemia, malaria, and other infections were the most common CODs in the CP cohort. CONCLUSIONS: Risk of premature death was excessively high in children with CP in rural sub-Saharan Africa, especially in those with severe motor impairments or malnutrition. While global childhood mortality has significantly decreased during recent decades, this observed excessive mortality is a hidden humanitarian crisis that needs to be addressed.

Prevalence of cerebral palsy in Uganda: a population-based study.

BACKGROUND: 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. METHODS: 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. FINDINGS: 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. INTERPRETATION: 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. FUNDING: Swedish Research Council, Promobilia.