A randomized controlled pilot trial of a Web-based resource to improve cancer knowledge in adolescent and young adult survivors of childhood cancer

Abstract

Objective This study examined cancer knowledge in adolescent and young adult (AYA) survivors and pilot tested a web-based resource to provide individually tailored information regarding cancer treatment history, late effects risk, and resources. Methods Fifty-two survivors (15–28 years old) who completed cancer treatment were recruited from the University of Minnesota oncology clinics. Participants were randomly assigned to receive access to personalized health history, late effects information, and resources via a password-protected web portal or to standard of care (physician counseling) only. Participants completed surveys measuring cancer knowledge, health locus of control, and psychosocial well-being prior to randomization and approximately 1 year later. Results Overall, few participants accurately reported their chemotherapy history with detail (19% at baseline and 33% at follow-up), and many did not recognize that previous cancer treatments could impact future health (60% at baseline and 54% at follow-up). Among those randomized to the receive access to the website, utilization was very low, making it difficult to draw conclusions about efficacy. Nonetheless, these data suggest that offering tailored information through the web was not more effective than standard of care at improving cancer knowledge. Anxiety and health beliefs were associated with cancer knowledge, including knowledge of steps survivors could take to mitigate late effects risks (p < 01). Conclusions Knowledge gaps exist among AYA survivors regarding important aspects of their treatment histories and ongoing health risks. Offering purely educational information (either in person by providers or via the web) does not appear to be enough to close this gap.

Survivorship Care Plans in Cancer: A Meta-Analysis and Systematic Review of Care Plan Outcomes

“…Participants also generally agreed that SCPs were “useful” and “helpful” . Most participants were satisfied with their SCP and its usability . However, 90% of survivors in one cross‐sectional study indicated that they were unsure about the importance of survivorship information for cancer survivors .…”

eHealth and mHealth interventions in pediatric cancer: A systematic review of interventions across the cancer continuum

“…There were 16 eHealth interventions that were diverse in content and type. These studies involved the use of social robotic‐assisted therapy to reduce cancer‐related distress; cognitive rehabilitation to mitigate risk associated with neurocognitive late effects; web‐based resources to improve cancer knowledge and health‐related behavior change; video games to improve treatment adherence, physical functioning, and QoL; and virtual reality to decrease procedure‐related distress as well as anxiety and depression …”

“…Seven studies investigated outcomes pertaining to emotional distress; outcomes included anger, anxiety, depression, perceived stress, and posttraumatic stress . There was a significant decrease in anger for pediatric cancer patients (mean age = 9.5 years) who participated in an 8‐week, randomized controlled pilot intervention involving the use of a social robot.…”

Ethical issues in the care of adolescent and young adult oncology patients

“…Although 15 states currently mandate insurance coverage for some forms of infertility, these mandates do not apply to fertility preservation before chemotherapy . Posthumous reproduction and determining rights to preserved genetic tissue can also create ethical dilemmas after the death of a cancer patient who participated in fertility preservation . Lastly, insufficient communication about fertility preservation prevents some patients from making an informed decision .…”

“…97 Posthumous reproduction and determining rights to preserved genetic tissue can also create ethical dilemmas after the death of a cancer patient who participated in fertility preservation. [98][99][100] Lastly, insufficient communication about fertility preservation prevents some patients from making an informed decision. [101][102][103][104] For further discussion of adolescent fertility preservation, see Quinn et al 105…”