Purpose/Objectives
To report functional (physical & cognitive) late effects, experiences and information needs of adult survivors of childhood cancer. The increasing population of survivors makes understanding the effects of treatment and identifying needs vital to promoting health.
Design
Descriptive, mixed methods survey.
Setting
Two pediatric oncology programs in the Midwest.
Sample
Convenience sample of 271 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 paper 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 47.5%. Functional late effects, perceptions, and information needs all correlated with intensity of treatment (those survivors most heavily treated experiencing the most symptoms). Survivors wanted more information about late effects and how to deal with them. Females 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.
As survival rates for children treated for childhood cancers become significantly better, the focus is increasingly on determining the late effects of treatments and the best ways to monitor for them and prevent their occurrence. This review focuses on recent literature discussing the late effects of treatment in patients treated for acute myeloid leukemia and acute lymphoblastic leukemia during childhood. The late effects of therapy for childhood leukemia include secondary malignancy, cardiotoxicity, obesity, endocrine abnormalities, reproductive changes, neurocognitive deficits, and psychosocial effects. As clinicians have become more aware of the late effects of therapy, treatment regimens have been changed to decrease late effects, but patients still require long-term follow-up for their prevention and treatment.
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