Building a cancer genetics and prevention program
Surveillance and recall program
Key to the success of a cancer genetics program is successfully coordinating care so preventive tests and measures are performed to decrease cancer risk. The SCGPP aims to be the home for familial and hereditary cancer patients. For these patients, this implies a strong commitment to their needs, with a special emphasis on the appropriate prophylactic and cancer surveillance measures. The registry database provides an extremely useful tool to track scheduled tests and procedures and to generate reminders. The advanced practice registered nurse meticulously follows them and ensures proper completion and review. She follows up on the scheduling of the specific tests, reviews results once these tests are completed, and brings them back to discussion with the physician leader. She also follows up on incomplete tests and helps to bring down potential barriers in the performance of these tests. Another key aspect of her job consists of facilitating the assistance of psychological support or risk reduction through lifestyle changes, such as smoking cessation or weight reduction, to patients in need of such services.
Cancer genetics research
Key to an academic program in cancer genetics like this one is to facilitate the study of familial and syndromic cancers, including aspects such as phenotype characterization or the efficacy of chemopreventive approaches. To accomplish this, a patient registry is essential. Registries are extremely useful tools that facilitate data accrual and analysis. The SCGPP registry is based on the Progeny suite that incorporates not only clinical and pedigree building components but also the genotype and sample management systems (LAB and LIMS). Thus, a fully searchable and robust database and biological sample repository have been created, and all patients are approached about participating in this institutional review board–approved registry.
Cancer prevention in nonfamilial, nonsyndromic cases
Some nongenetic factors such as diet, physical activity, or toxic exposure seem to underlie the important differences seen in CRC incidence around the world.12 Thus, interventions at this level can potentially have a very high impact for cancer prevention in all individuals. In fact, even individuals with genetic mutations that carry a high risk for developing malignancies can see their risk modified by addressing lifestyle/environmental factors.13 Thus, the SCGPP has created tools for assessment and risk stratification that take the mentioned factors into account and create a roadmap for primary prevention. The tools include questionnaires on all environmental exposures, lifestyle factors, and medications the patient is exposed to and that can influence cancer risk. The information is reviewed in a special clinic session, and all services to help modify risk factors are offered to the patient.
Conclusions
There is a clear need for GI cancer genetics services to reach all patients who can benefit from them, and at the same time the field is rapidly growing in complexity. More than ever, these services demand a multidisciplinary approach, with experts leading the care of these patients in a coordinated fashion with the rest of the health care community. However, payers have not fully recognized these complexities, and some critical aspects such as genetic counseling services are not always properly reimbursed. As we shape up the present and future of health care that should be fully personalized and patient-centered, embracing new ways of delivering it, we need to engage all the players and help them understand what this takes and the rewards in the form of better outcomes that will come with it.
References
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