The online version of this article (https://doi.org/10.1186/s12887-017-0974-x) contains supplementary material, which is available to authorized users.
In the management of hypertonicity in children with cerebral palsy (CP), goals should be clearly identified in order to evaluate the effectiveness of botulinum toxin A (BoNT-A) treatment, specifically in non-ambulatory children and adolescents, Gross Motor Function Classification System (GMFCS), level IV or V. A retrospective chart review (Mesterman et al., 2013) identified the need for the development of a set of specific and meaningful goals linked to the International Classification of Functioning, Disability and Health (ICF) for future goal setting and evaluation in this population. Our objective is to create an inventory of goals based on the ICF framework that captures the needs and values of families with children with CP.
This cross-sectional observational study recruited parents of twenty children and youths with CP in GMFCS levels IV or V (mean age 11.2 years, SD 4.3, 13 males) who were assessed for BoNT-A treatment at the Spasticity Management Clinic at McMaster Children’s Hospital (Hamilton, ON). A previous inventory of goals was developed by a group of experts at a national botulinum toxin conference held in January 2014 (Montreal, Canada). The inventory of goals was further refined by asking the parents to select goals from the inventory list that they would like their child to accomplish after receiving BoNT-A treatment, and asking healthcare professionals for clarity and phrasing of goals in the inventory list.
All parents identified body structure and function goals, with more than 75% of parents selecting reduction in muscle tone and increased range of movements in the upper and lower extremities. More than 50% of parents identified activity goals related to ease of caregiving. Two activity goals and three participation goals were missing from the inventory. Participation goals were identified by less than 5% of parents.
The inventory may be a helpful tool to facilitate a discussion about goal setting between healthcare professionals and families in the context of BoNT-A treatment. A future study is needed to conduct qualitative interviews to better understand the information that families may require about setting goals during BoNT-A treatment and to evaluate the usefulness of the inventory.
Additional file 1: Inventory of Goals in the Context of Botulinum Toxin A Treatment. An initial inventory of goals was developed by a special interest group at the national botulinum toxin conference held in January 2014 (Montreal, Canada). There were 16 items categorized into three domains based on the ICF framework: body structure/function, activity, and participation. In this study, parents were asked to select items from this initial inventory that they would like their child to accomplish as goals after botulinum toxin treatment. Parents were also asked to provide additional goals that were not listed in the inventory. (PDF 165 kb)12887_2017_974_MOESM1_ESM.pdf
Additional file 2: Inventory of Goals in the Context of Botulinum Toxin A Treatment (modified). A revised version of the inventory has been created based on study findings. Parents identified one body structure/function goal and one activity goal, which were not listed in the draft inventory list of goals. The therapists identified three participation goals. Feedback from the research team and therapists led to the re-categorization and rephrasing of goals. The revised ad updated inventory list of goals is comprised of 20 goals categorized into the ICF domains of body structure and function, activity, and participation. (PDF 207 kb)12887_2017_974_MOESM2_ESM.pdf
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- Development of an inventory of goals using the International Classification of Functioning, Disability and Health in a population of non-ambulatory children and adolescents with cerebral palsy treated with botulinum toxin A
Jan Willem Gorter
- BioMed Central