The American Academy of Pediatrics (AAP) clinical report, Shared Decision-making and Children with Disabilities: Pathways to Consensus states that “shared decision-making (SDM) promotes family and clinician collaboration, with ultimate goals of improved health and satisfaction.” Regarding epilepsy care, shared decision-making is essential when decisions are to be made around treatment and medication (ie considering surgeries and devices, choosing treatments for female patients during reproductive years and discussing side effects of medications).

In the spring and summer of 2021, the National Coordinating Center for Epilepsy conducted a national needs assessment to explore existing gaps and challenges in health care for children and youth with epilepsy, along with the assets, resources, capabilities and strengths that patients, their families, and health care providers possess. Regarding SDM, both young adult patients with epilepsy and their families indicated that ineffective communication from physicians and lack of adequate information and resources, particularly at the time of diagnosis, hampered their sense of feeling like a partner in their/their child’s care. Perceptions of SDM also impacted perceptions about health care in general. Young adult patient and parent/caregiver participants who had more positive perceptions of SDM also had more favorable perceptions of access to care and quality of care while having fewer negative attitudes towards their own/their child’s epilepsy. The comprehensive needs assessment report can be found here .

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American Academy of Pediatrics