16 Improving quality of life through activity and self-management in children and young people with spina bifida
Bibliographic record
Abstract
The Neurosurgery Spina Bifida (SB) clinic supports long-term follow-up of children and young people with spina bifida (CYPwSB). The multidisciplinary team (MDT), including an advanced nurse practitioner, physiotherapist, urology nurse specialist, and SHINE Charity worker, works together to improve the quality of life for CYPwSB. This service evaluation explored how mobility and participation in physical activities influence quality of life, identifying barriers and facilitators to participation and examining the experiences of CYPwSB and their families as they transition to self-management.Methods This registered service evaluation (No. 3865) reviewed anonymised patient records identified through string searches using the EPIC Slicer Dicer tool: diagnosis (myelomeningocele); age (4–18); date (01/2023–06/2024). Families were invited to participate during clinic visits or via MyGOSH. Forty CYPwSB were included in the review of mobility outcomes, and 10 CYPwSB and their families shared their experiences of physical activity, self-management, and transition. Interviews were recorded and transcribed with consent, and motor outcomes were mapped onto a published framework.Results Mobility outcomes for CYPwSB with moderate spinal impairment differed from expected, with a preference for wheelchair use to support participation. Those involved in activity clubs and parasports reported better socialisation and self esteem, while others faced environmental and physical barriers that limited participation. Across all levels of impairment, comorbidities including previous surgeries, hydrocephalus, and communication difficulties, appeared to compound barriers to participation and self-management.Discussion The MDT clinic plays a crucial role in supporting CYPwSB to achieve a higher quality of life by promoting participation in physical activities and addressing the specific barriers they face. While many CYPwSB report positive outcomes in terms of activity, participation and self-management, these benefits are not uniformly experienced. We propose a quality improvement project to address disparities and further improve the quality of life for all CYPwSB, focusing on outcomes across all ICF domains.Acknowledgements for Funding or Support This work was completed as part requirement for MSc Advanced Physiotherapy and Physiotherapy Studies at UCL Great Ormond Street Institute of Child HealthReferences World Health Organisation. (2001) International Classification of Functioning, Disability and Health (ICF).Rosenbaum P, Gorter JW. The ‘F-words’ in childhood disability: I swear this is how we should think! Child Care Health Dev. 2012;38.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.003 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".