Survey Instrument
All FHCRC HCT survivors consenting to long-term follow-up receive an annual survey consisting of 236 questions mailed on their transplant anniversary. The annual survey includes standardized questions on interval changes in health and presence of cGVHD or other health conditions. For this study, a 60-question supplementary module was added to the annual survey to collect information on neurocognitive function and perceived cognitive quality of life. This supplementary module included items from several validated self-reported survey measures. The Childhood Cancer Survivor Study Neurocognitive Questionnaire (CCSS-NCQ) is validated for use in adult survivors of childhood cancer and consists of 33 questions divided into 4 domains of emotional regulation, task efficiency, memory, and organization.19 The factors of emotional regulation and organization are primarily measures of executive function, while task efficiency and memory address attention, processing speed, and both working and long-term memory.20 The Neuro-Quality of Life Cognitive Function Short Form (Neuro-QoL) Version 2.0 is an 8-question self-reported measure addressing perceived difficulties in cognitive abilities, as well as application of these abilities to daily tasks reflecting cognitive quality of life.21 The Patient-Reported Outcomes Measure Information System (PROMIS) Sleep Disturbance Short Form 4a is a 4-question survey to assess perception of sleep quality and restfulness.22 An additional 3 questions were adapted from the National Health and Nutrition Examination Survey (NHANES) 2011 Audiometry Questionnaire to screen for hearing issues (6-point Likert scale), need for hearing aid, or presence of tinnitus (5-point Likert scale).23 Finally, 6 questions were included to assess for neurologic conditions predicted to impact neurocognitive function, including previous stroke or transient ischemic attack and epilepsy or seizures. For this analysis, we used responses from surveys distributed from July 2018 to June 2019 with all results collected by November 2019. During this time, initial non-responders were sent 2 follow-up survey requests for a total of 3 mailings.