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.