24: PTC Behavioral Research
Updated: 12/17/2019 JMG
In conjunction with this web site and other resources scheduled for delivery as part of this TRIO Post-transpalnt Cancer project, there is a major research project working in parallel addressing how to change behavior of post-transplant recipients with respect to the actions presented in the "10 Best Practices" for dealing with higher risk of PTC and other habits presented throughout the various sections of this web site.
Note: Along with several other resources, this is a future deliverable in TRIO's 5-year Cancer Project plan with no assigned dates yet.
but built around the understanding that .. .
Addressing the patient behavioral change challenge . . .
Why 'behavioral research'?
The typical scenario for kidney patients, as a prime example (other organ transplant programs tend to follow their patients for life) involves some early mention of the higher risk for cancer post-transplant as part of the initial work-up with a candidate. Being so involved with the many new complexities associated with getting listed and ready for transplant, and even after the transplant, a patient often puts on the lowest priority any concerns about that possibility of cancer which may come many years later.
For kidney recipients, its not unusual, due to the ever growing size of the transplant center's patient load, to get transferred back to their local non-transplant nephrologist for long term care. That medical team, not being educated or focused on transplant issues, might not ask or follow-up on the risk and best practices of care for the risk of post-transplant cancers. Without that regular reminder as years go on, cancers, especially skin cancers as just one common example, arise and are not recognized or treated effectively. Even dermatologists without transplant patient experience, may not treat issues as aggressively as needed to avoid further more serious (even eventually life threatening if left unchecked) issues that can develop from the skin's surface into the body's blood stream and thus on an open pathway to affecting other parts of the immune-suppressed body.
This 'behavioral research' part of the TRIO post-transplant project looks for ways to change patient behavior in acknowledging their higher risk status and taking proactive steps to avoid or treat early, these cancer issues when treatment can be effective in such early stages, thus becoming only a 'slight bump in the road' rather than a more serious 'mountain to climb.'
Recipient participation in those studies will be welcomed with invitations extended as research activity dictates. Stay tuned.
Updates on this research project, expected to span several years of work and study, will be posted here.
Developed notes: check out this book on behavioral change: