Matthew Haddon, Loren West, Catherine Elliott, Corrin Walmsley, Jane Valentine, Natasha Bear, Dayna Pool, Healthy Strides Research Advisory Council

Abstract

Objectives: To determine the feasibility of an intensive interdisciplinary programme in improving goal and motor outcomes for preschool-aged children with non-progressive neurodisabilities. The primary hypothesis was that the intervention would be feasible.

Design: A single group feasibility study.

Setting: An Australian paediatric community therapy provider.

Participants: Forty children were recruited. Inclusion criteria were age 2-5 years with a non-progressive neurodisability, Gross Motor Function Classification System (GMFCS) levels III-V or equivalent, and goals relating to mobility, communication and upper limb function. Exclusion criteria included orthopaedic surgery in the past 6 months, unstable hip subluxation, uncontrolled seizure disorder or treadmill training in the past month.

Intervention: A goal-directed programme of three 2-hour sessions per week for 4 weeks (24 hours total). This consisted of treadmill and overground walking, communication practice, and upper limb tasks tailored by an interdisciplinary team.

Primary and secondary outcome measures: Limited-efficacy measures from preintervention (T1) to postintervention (T2) and 4-week follow-up (T3) included the Goal Attainment Scaling (GAS), Canadian Occupational Performance Measure (COPM), Gross Motor Function Measure (GMFM-66) and 10-Metre Walk Test (10MWT). Acceptability, demand, implementation and practicality were also explored.

Results: There were improvements at T2 compared with T1 for all limited-efficacy measures. The GAS improved at T2 (mean difference (MD) 27.7, 95% CI 25.8 to 29.5) as well as COPM performance (MD 3.2, 95% CI 2.8 to 3.6) and satisfaction (MD 3.3, 95% CI 2.8 to 3.8). The GMFM-66 (MD 2.3, 95% CI 1.0 to 3.5) and 10MWT (median difference -2.3, 95% CI -28.8 to 0.0) improved at T2. Almost all improvements were maintained at T3. Other feasibility components were also demonstrated. There were no adverse events.

Conclusions: An intensive interdisciplinary programme is feasible in improving goal and motor outcomes for preschool children with neurodisabilities (GMFCS III-V or equivalent). A randomised controlled trial is warranted to establish efficacy.

Trial registration number: ACTRN12619000064101.

Keywords: Clinical trials; Developmental neurology & neurodisability; Neurological injury.

Caitlin Gray, Helen Leonard, Kingsley Wong, Sally Reed, Kate Schmidt, Rachel Skoss, Jianghong Li, Alison Salt, Jenny Bourke, Emma J. Glasson

Abstract

Background: Siblings of children with intellectual disability have unique family experiences, varying by type of disability.

Methods: Parents of children with Down syndrome (156) or with Rett syndrome (149) completed questionnaires relating to sibling advantages and disadvantages, experiences of holidays and recreation, and perceived availability of parental time. Qualitative responses were analysed using thematic analysis.

Results: Positive personality traits, an optimistic outlook, enhanced skills, and rich relationships were strong and consistent parental perceptions for siblings in both disability groups. Parents of children with Rett syndrome were more likely to rank themselves lower on time availability, and to report sibling difficulties with social engagement and family holidays.

Conclusions: Parental responses appeared to be influenced by disability type, and reflective of child capabilities. Perceptions of sibling experience should be supplemented by data collected directly from siblings to fully understand their unique perspective, and the ways in which their experiences could be enhanced.

MYTHS AND FACTS ON HIPS IN CHILDREN WITH CEREBRAL PALSY

Reflections on this episode:

Professor Susan Stott is a Professor of paediatric orthopaedic surgery at the University of Auckland, New Zealand and paediatric orthopedic surgeon at Starship Children’s Hospital in New Zealand.

Professor Stott was the second President of the AusACPDM and was the only New Zealand investigator on the NHMRC Centre for Research Excellence: Australasian Cerebral Palsy Clinical Trials Network hosted at University of Queensland.

She is the clinical lead of the New Zealand CP register and on the reference group of the newly formed Neurodevelopmental Network, under the auspices of the Paediatric Society of New Zealand. She therefore has the ability to translate key research findings into clinical practice through strong alliances with key stake-holders within the health sector.

In terms of general citation indices, her work has been cited 1546 times and h index 34. She has received the Gillies medal from the NZ Orthopaedic Assoc. for best paediatric orthopaedic research paper in 1998 and again in 2008. In 2018, she was the AusACPDM Transformative Practice Award Winner and also received the prestigious Presidential Award, New Zealand Orthopaedic Association