Understanding the Functional Late Effects and Informational Needs of Adult Survivors of Childhood Cancer

PURPOSE/OBJECTIVES: To report functional (physical and cognitive) late effects, experiences, and information needs of adult survivors of childhood cancer. DESIGN: Descriptive, mixed methods survey. SETTING: Two pediatric oncology programs in the Midwest. SAMPLE: Convenience sample of 272 young adult survivors. METHODS: Voluntary survey completion by young adult survivors regarding late effects, experiences, and educational needs to develop appropriate comprehensive care programs for care provision before, during, and after transition to adult care. Survey domains were identified from existing survivorship literature and focused on all aspects of survivorship; however, this article focuses on results specific to the functional domain. MAIN RESEARCH VARIABLES: Functional late effects, experiences, information needs, age, gender, and treatment intensity of young adult survivors of childhood cancer. FINDINGS: Response rate was 48%. Functional late effects, perceptions, and information needs all correlated with intensity of treatment (those survivors most heavily treated experienced the most symptoms). Survivors wanted more information about late effects and how to deal with them. Women wanted more information about fertility-related topics, and participants who received more intense treatment generally wanted more information. Brain tumor survivors perceived greater cognitive difficulties, cognitive late effects, fatigue, and financial difficulties. CONCLUSIONS: Survivors experience myriad physical late effects and require ongoing access to information as needs change over time. IMPLICATIONS FOR NURSING: Identifying new and innovative ways to reach survivors and better meet needs is important for care, research, and program development. KNOWLEDGE TRANSLATION: The findings of the research underscore the importance of continuous learning opportunities for adult survivors of childhood cancer. The findings also highlight the need for healthcare teams to better understand the current and long-term needs of this population. In addition to traditional communication approaches, technologies such as social media and telemedicine can provide innovative ways to deliver patient-centered care.