OBJECTIVES

: In pediatric epilepsy, parents/caregivers play a crucial role from helping children understand the disease to making treatment decisions. The success of shared decision-making (SDM) between the clinician and a child relies heavily on the participation of parents/caregivers. To improve SDM, patient reported outcome (PRO) tools focusing on children are utilized. However, some PROs focus only on parents/caregivers, limiting a clear understanding of the child’s beliefs regarding the disease or treatments. The objective of the review is to identify PRO tools used to improve SDM in pediatric epilepsy.

METHODS

: The PRISMA guidelines for systematic review was followed and articles referenced in PubMed, CINHAL, and Psycinfo between 1995-2016 were searched. The articles reviewed focused on pediatric epilepsy and included PRO tools used in SDM. Review articles, thesis/dissertations, editorials and case studies were excluded from the review.

RESULTS

: A total of 256 relevant articles were identified and based on the inclusion/exclusion criteria, 12 articles were included in the final review. Generic PROs used in pediatric epilepsy patients included Measure of Process of Care-20, Children’s Depression Inventory, Parent Medical Interview Satisfaction Scale and disease-specific PROs included Child Health Questionnaire (child version), CHQ-PF (Parent version), Epilepsy Side-Effects Questionnaire, Children Behavior Checklist, Young Adult Self-Report, and the PEDSQL Epilepsy Module. Children, aged 5-12 years, completed the child versions. Caregivers noted a lack of education about multiple treatments options, and negative treatment outcomes as factors that impacted their child’s health. Overall, SDM was lacking when treatments were discussed by clinicians.

CONCLUSIONS

: Limited PRO tools are available to obtain both caregiver’s and children's views regarding epilepsy and its treatments. Most PROs focused on either the treatment or disease severity and exhibited high variability in use. There is a need to optimize PRO tools in pediatric epilepsy so as to improve their performance and improve SDM.