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.

Surgical Release of Gluteal Fibrosis in Children Results in Sustained Benefit at 5-Year Follow-up.

BACKGROUND: Gluteal fibrosis (GF) is a fibrotic infiltration of the gluteal muscles resulting in functionally limiting contracture of the hips and is associated with injections of medications into the gluteal muscles. It has been reported in numerous countries throughout the world. This study assesses the 5-year postoperative range of motion (ROM) and functional outcomes for Ugandan children who underwent surgical release of GF. METHODS: A retrospective cohort study of children who underwent release of GF in 2013 at Kumi Hospital in Eastern Uganda. Functional outcomes, hip ROM, and scar satisfaction data were collected for all patients residing within 40 km of the hospital. RESULTS: One hundred eighteen children ages 4 to 16 at the time of surgery were treated with surgical release of GF in 2013 at Kumi Hospital. Of those 118, 89 were included in this study (79.5%). The remaining 29 were lost to follow-up or lived outside the study's radius. Detailed preoperative ROM and functional data were available for 53 of the 89 patients. In comparison with preoperative assessment, all patients postoperatively reported ability to run normally (P<0.001), sit upright in a chair (P<0.001), sit while eating (P<0.001), and attend the entire day of school (P<0.001). Passive hip flexion (P<0.001) improved when compared with preoperative measurements. In all, 85.2% (n=75) of patients reported satisfaction with scar appearance as "ok," "good," or "excellent" 29.2% (n=26) of patients reported back or hip complaints. CONCLUSIONS: Overall, the 5-year postoperative outcomes suggest that surgical release of GF improves ROM and functional quality of life with sustained effect. LEVEL OF EVIDENCE: Level IV-case series.