We catch up with Professor Hércules Ribeiro Leite - to discuss his 2024 top-cited DMCN article!

Deisiane Oliveira Souto, Marina Oliveira de Sousa, Rafaela Guimarães Ferreira, Ana Claudia Brandão, Pedro Brandão Carrera, Hércules Ribeiro Leite

Free article

Abstract

Aim: To determine the barriers and facilitators of active community participation of children, adolescents, and adults with Down syndrome.

Method: Searches were completed in five electronic databases to identify original studies about participation of children, adolescents (ages < 18 years), and adults (ages 18-59 years) with Down syndrome. Barriers and facilitators to participation were categorized into four factors: personal, social, environmental, and policy and programme. Findings were analysed and validated by a young adult with Down syndrome and a family member, using the public and patient involvement strategy.

Results: Fourteen studies were included: eight with children and adolescents and six with adults. Of the 14 studies, 10 were qualitative and four quantitative. Most studies (n = 9) investigated participation in physical activities, while only a few examined participation in community/social activities (n = 3), daily activities (n = 2), and leisure activities (n = 1). The most commonly cited barriers and facilitators were the availability of programmes and specialized professionals, transportation, as well as attitudes and behaviours. Physical and psychological characteristics of people with Down syndrome and facilities were also frequently mentioned as barriers. On the other hand, the desire to stay active and personal interest in the activity were among the most frequently reported facilitators.

Interpretation: The participation of people with Down syndrome is mainly influenced by physical or psychological factors, the support and attitudes of parents/caregivers, and the availability of specialized programmes. Given the scarcity of research investigating the participation of people with Down syndrome in community activities, daily activities, and leisure, especially in adults, more studies are still needed.

Erika Cloodt, Jenny Hedberg-Graff, Anna Lindgren, Marianne Arner, Evgenia Manousaki, Katina Pettersson, Elisabet Rodby-Bousquet

Abstract

Aim: To analyse longitudinal changes in passive range of motion (ROM) in the upper limb in adults with cerebral palsy (CP).

Method: Passive ROM for shoulder abduction and flexion, supination, and elbow and wrist extension was analysed in a longitudinal cohort of adults aged 16 to 76 years from the Swedish CP registry. Individual ROM trajectories and mean ROM curves were calculated using the Manual Ability Classification System (MACS). A mixed-effects model was used to examine changes over 3 to 13 years 7 months.

Results: In total, 1395 adults with CP were analysed (769 males, 626 females; median age 26 years). A continuous decline in shoulder ROM, supination, and wrist extension was observed across all MACS levels. Decline rates differed between MACS levels for shoulder flexion, elbow extension, and wrist extension, with steeper declines at higher MACS levels (levels IV and V). Adults classified in lower MACS levels (I and II) had greater initial ROM and slower declines compared to adults classified in higher MACS levels.

Interpretation: Upper-limb ROM continuously declined in adults with CP, particularly at higher MACS levels. The varied decline rates highlight the need for tailored interventions and systematic follow-up to maintain ROM and functional ability, especially among individuals at higher risk.

Zhe Yuan, Alexander Aretakis, Chris Church, M Wade Shrader, Freeman Miller, Anuj Gupta, Arianna Trionfo, Jason J Howard

Abstract

Background: Hip displacement (HD), common in cerebral palsy (CP), is reportedly less prevalent for spastic hemiplegia. Patients with a Winter-Gage-Hicks (WGH) type IV gait pattern are believed at increased risk of HD, but true prevalence is unknown. This study aimed to analyze the rates of HD according to the sagittal plane-based WGH classification and identify associated risk factors.

Methods: Patients with hemiplegic CP, ≥1 instrumented gait analysis (IGA), hip surveillance radiograph(s), and minimum 2-year follow-up were included. The primary outcome was presence of an "unsuccessful hip" defined as a migration percentage ≥30% and/or undergoing reconstructive osteotomies for HD. Secondary outcome variables included WGH type, previous surgery, sex, scoliosis, epilepsy, ventriculoperitoneal shunt, gastrostomy tube, and IGA-derived hip kinematics.

Results: Included were 144 patients (39.6% female), classified as Gross Motor Function Classification System I (45.1%) or II (54.9%), mean follow-up 9.6 ± 4.6 years. Seventeen patients (11.8%) had an unsuccessful hip outcome (age 11.6 ± 3.6 years). Stratified by WGH type, unsuccessful hip outcome rates were I: 9.5% (2/21), II: 9.4% (6/64), III: 6.7% (2/30), and IV: 24.1% (7/29); age at onset was not different between WGH types (p = 0.8). Multivariate analysis identified hip internal rotation (odds ratio [OR]: 4.7, confidence interval [CI]: 1.2-18.1, p = 0.02) and hip adduction (OR: 5.2, CI: 1.2-22.1, p = 0.02) as significant independent risk factors.

Conclusion: The rates of HD in spastic hemiplegia were higher than expected for all WGH types, particularly IV. A high index of suspicion and regular hip surveillance radiographs is required for patients with hip internal rotation and adduction, starting during preadolescence.

Level of evidence: III-Retrospective cohort observational study. See Instructions for Authors for a complete description of levels of evidence.