Aim: Late effects of childhood brain cancer can emerge decades post-treatment cessation. Long-term follow-up care is advised, but barriers to access can lead to disengagement from oncology services. We formulated a self-report, remote health and lifestyle assessment to thoroughly review childhood cancer survivors' current health concerns across various body systems, psychosocial domains, health behaviors, medication use, and genetic information. This study aimed to evaluate the accuracy, feasibility, and acceptability of this comprehensive assessment tool.
Method: Childhood brain cancer survivors completed the health and lifestyle assessment online. Following completion, a survivorship nurse validated each response during an online telehealth consultation with the survivor (16 categories of body systems; between 137 and 408 items). Concordance between survivor and nurse reports was calculated. At one-month post-intervention, survivors completed a program evaluation survey.
Results: A total of sixty-one survivors (mean age=21 years; range=10-41 years) participated. The overall survivor/nurse discordance rate between reports was 10.6%, with the most discordant sections related to hearing (16%), dental (13%), endocrine (13%), and central nervous system (13%). On average, the assessment took 50 minutes for survivors to complete, and 67 minutes for nurses to validate responses during the online consultation. Survivors reported the health and lifestyle assessment to be "relevant to their medical care" (79%), "easy to complete" (88%), and reported that the nurse consultation "helpful" (97%).
Conclusion: The remote health and lifestyle assessment was highly acceptable to survivors, feasible for clinical implementation, and demonstrated accuracy in assessing survivors' health concerns. This remote assessment supports a telehealth model for ongoing cancer survivorship care.