Goal-Setting for Botulinum Toxin Treatment in Cerebral Palsy

Children and their families were invited to participate in this study while attending their regular clinic appointment at the Spasticity Management Clinic at McMaster Children’s Hospital. Both parents were invited to participate in the interview. Assessment in clinic was conducted as usual, but there was a more thorough discussion on setting goals related to BoNT-A treatment. The interviews took place after the assessment by the therapist, but before a decision was made with the physician. After a decision was made and BoNT-A treatment was recommended, it was administrated either in clinic or under sedation at a different time.
For the purpose of this study, the interview was conducted with parents during the clinical appointment. Initially parents were asked an open-ended question of: “What kinds of goals do you have for your child with cerebral palsy after receiving botulinum toxin treatment?” Following the discussion, parents were provided with a draft of the inventory of goals developed by SIG (see Additional file 1, PDF document: Inventory of Goals in the Context of Botulinum Toxin A Treatment). Parents were asked to identify and select the goals listed in the inventory that they find are most important or meaningful to achieve following the BoNT-A treatment. After completing the inventory of goals, parents were asked to provide additional goals that they had considered and were missing from the inventory. The family, child, and multidisciplinary team also had a discussion about the process of setting goals when the child was being assessed for BoNT-A treatment. The goals discussed and selected by the family and the spasticity team members were recorded by the student research assistant who was observing the discussion.
Treatments goals were categorized according to the domains of body function/structure, activity, and participation in the International Classification of Functioning, Disability, and Health (ICF) [7 (link)]. The categorization of the goals into the ICF domains was based on a discussion between the research assistant and healthcare professionals in the Spasticity Clinic at McMaster Children’s Hospital.