Comparing the Knowledge of Parents and Survivors Who Attend a Survivorship Clinic.

BACKGROUND: This study underscores the importance of the survivor/parent dynamic in understanding the knowledge level of childhood cancer survivors and their parents with regard to cancer diagnosis, treatments, and potential late effects, and to assess the impact of parental knowledge on survivor's knowledge. PROCEDURE: A convenience sample (N = 219 dyads) consisting of childhood cancer survivors with a parent match was used. Survivors 2 years out from completion of therapy, aged 16 to 25 years, and fluent in English or Spanish completed 2 questionnaires to assess adolescent and young adult and parental knowledge regarding diagnosis, treatment, and long-term risks. RESULTS: Data from the survivor/parent dyad confirm that parents are more knowledgeable than their child regarding treatment specifics. However, survivors are more accurate when assessing second tumor and fertility risk. More knowledgeable parents led to more knowledgeable survivors. CONCLUSIONS: Although parents were well-informed about treatment specifics, they were not as accurate in identifying risks appropriately. Therefore, education must be directed at both parent and survivors to maximize knowledge.

Identifying Barriers Among Childhood Cancer Survivors Transitioning to Adult Health Care.

The aim of this study was to identify and describe barriers of young adult childhood cancer survivors transitioning to adult health care within 5 years of leaving a pediatric oncology practice. Several barriers have been identified in the literature, but other obstacles as to why this vulnerable population may be avoiding health care are unknown. This is a descriptive pilot study of a convenience sample of childhood cancer survivors, currently 20 to 25 years of age, who were diagnosed at less than 21 years of age. The Transition to Adult Care Survey assessing survivor barriers is an online survey consisting of 15 questions, with a drop-down menu for answers and 2 open-ended questions. The survey was accessible by smartphone or computer. Standard descriptive statistics were used to describe variables of interest. Our population consisted of 48 childhood cancer survivors. Their mean age was 23.21 years. Only 74% reported following through with annual preventive screening, and 57% reported that they consider themselves at risk for further medical problems as a result of their cancer treatment. Lack of knowledge of the importance of health screening may be a potential barrier to consistent follow-up care.

Parental follow-through of neuropsychological recommendations for childhood-cancer survivors.

In the past 40 years, outcomes for children with cancer have changed considerably. The survival rate has increased to approximately 80%. With success and survival come detriments that often occur over time called late effects of cancer treatment. When the central nervous system is treated with radiation or chemotherapy, we often see impairment to the senses, cognition, and learning. For children who receive central nervous system treatment, follow-up with a neuropsychological evaluation is an excellent tool to evaluate learning and behavior in relationship to a child's brain. The authors' research examined neuropsychological evaluations for common themes related to diagnosis, age, sex, and/or treatment received, and the authors investigated whether the families implemented recommendations suggested in the neuropsychological evaluation. Less than 50% of recommendations from evaluations were implemented. The authors found that families need ongoing support and knowledge to implement the neuropsychological testing recommendations. Families need assistance navigating the school system and advocating for their child's needs. Continued surveillance of the child's academic needs by both the psychology and oncology teams is essential for long-term success.