Returning to school: Parent preferences, perceptions, and preparedness.

Abstract

72 Background: Neurocognitive late-effects (LE) are among the most pervasive complications of childhood cancer and can impact academic success. Successful transition back to school can be challenging and requires parents to be knowledgeable of potential LE and procedures necessary to secure support services. It can be unclear which oncology provider has responsibility for ensuring parents have such knowledge. Further, little is known about parent preferences, perceptions, or preparedness regarding neurocognitive LE and available supports. Methods: As part of a PCORI-funded engagement award, an online parent survey was developed and disseminated about neurocognitive LE and school-related challenges after treatment. Survey items were informed by qualitative analysis of parent interviews and stakeholder input. Parents were recruited nationally via stakeholder social media, and foundation emails and websites. Results: Of the 202 parents responding, 53% reported receiving information on possible treatment related cognitive or school problems from their healthcare team, while 55% reported needing to seek information independently. Information was most often provided by the oncologist (32%), nurse/social worker (26%), or psychologist/neuropsychologist (17%). Parent preferences for topics included information on learning difficulties, physical/health problems that could impact school, and resources for neurocognitive LE. Approximately half (55%) thought their healthcare team understood the issues facing survivors returning to school, although 47% reported that the team did not inquire about school issues or only asked general questions during follow up visits. A large proportion of parents (49%) reported feeling generally underprepared for their child’s return to school. Additional information on parent preferences as well as implications for program development, advocacy, and transition procedures will be discussed. Conclusions: Oncology providers are on the frontline of educating and preparing parents to meet the challenges of children’s return to school after childhood cancer. Improved multidisciplinary services and coordination of care to ensure successful transition back to school are needed.