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.