108 Using a holistic framework to review the impact of lower limb botulinum toxin a treatment on ambulant children with cerebral palsy

• Published in: Archives of disease in childhood 2023-02, Vol.108 (Suppl 1), p.A40-A40
• Main Authors: Katchburian, Lesley, Hodgson, Xanthe, Crowe, Belinda
• Format: Article
• Language: English
• Subjects: Activities of daily living; Balance; Botulinum toxin; Cerebral palsy; Children; Digital posters; Family (Sociological Unit); Goal Orientation; Goal setting; Holistic Evaluation; Paralysis; Participation; Pediatrics; Physical fitness; Psychomotor Skills; Rehabilitation; Toxins; Walking; Young Adults
• ISSN: 0003-9888; 1468-2044
• DOI: 10.1136/archdischild-2023-gosh.108

BackgroundBotulinum toxin (BoNT-A) is an accepted treatment for increased muscle tone in children and young people with cerebral palsy (CP). It is used in conjunction with occupational and physiotherapy to promote improved motor ability. However, treating the impairment does not automatically increase participation in activities important to children and families. The F-words model sets the International Classification of Functioning, Disability and Health in a child-development context. It provides holistic assessment and directs intervention towards meaningful participation i.e. involvement in a real-life situation. This prospective single site study evaluated goal setting in ambulant children and young people with CP undergoing BoNT-A injections using the Canadian Occupational Performance Measure (COPM).Method64 CYPwCP participated in the study. Children and families were invited to set goals for their BoNT-A and rehabilitation, scoring baseline COPM performance and satisfaction for each goal. These goals were analysed using the F-words framework by the principal investigator (LK) and two independent reviewers.ResultsF-words analysis of 169 goals showed 33% in the Fitness category, addressing pain, fatigue, splint tolerance, aesthetics, range, movement selectivity, power, balance, and posture; 57% in Function, predominantly walking related and seven activities of daily living (dressing, toileting); 10% in Fun - leisure activities; 1 goal in Friends (keeping up with peers).DiscussionIn this study goal setting was inclusive (family identified) and allowed families to evaluate performance and satisfaction providing an objective measure of goal-outcome following BoNT-A. There was a tendency to concentrate on areas of Fitness and Function, rather than goals in meaningful contexts that reflected participation (Fun and Friends). For example, 80 goals referenced walking but only one had context – ‘in the playground’ - improving participation with friends. Asking families why they have identified their goals, and what improvements mean in their daily lives could help direct a participation narrative.