Persistent Challenges
Like other Discipline Committees in the cooperative group, the BSC
cannot develop and lead free-standing trials. Partnership with disease
and domain committees is therefore critical to promote behavioral
science aims early in concept development. There are logistical
challenges to conducting behavioral science research in a cooperative
group setting. As a more specialized discipline, some COG institutions
do not have a BSC member to champion relevant studies at their site. In
fact, some sites do not have ready access to psychology or
neuropsychology, even for clinical services. Traditional assessments of
neurocognitive function require a licensed
psychologist/neuropsychologist for administration, prohibiting
feasibility of this type of research in under-resourced institutions. In
addition, some of the most psychometrically robust measures of
neurocognition and QOL are copyrighted and have an associated cost,
which can be burdensome at the institutional level; funding is not
always available at the NCI level to help offset costs of materials or
management of these data. There are often not resources to administer
these measures in languages other than English, Spanish, or French,
limiting our ability to meet the need of some vulnerable or marginalized
populations.
Furthermore, behavioral science endpoints are often secondary or
exploratory aims embedded in therapeutic trials, resulting in long waits
for analysis, particularly when evaluating long-term follow-up. For
example, if a study aims to examine cognitive functioning at 5 years
post-diagnosis, and the study accrues patients over a 5-year period,
complete data for the behavioral science aim would not be available
until 10 years after trial initiation. This can be a prohibitive
timeline for investigators, especially YIs, who put significant effort
into the planning and activation of a trial but must wait a long time
for tangible products such as publications. This demonstrates the long
time between research evidence and translation to routine care.