We will develop and evaluate a patient-centered, primary care team based approach to identifying, evaluating, and managing individuals at high risk for cancer by virtue of family and personal health history.
The project will include patient and provider educational activities as well as piloting of new clinical workflows designed to better co-ordinate the care of individuals and families at elevated risk for cancer. Outcomes to be evaluated include patient and provider perception of care coordination, provider knowledge, skills and attitudes related to familial cancer syndromes, and patterns of uptake of cancer genetics services. This project will be conducted at practice sites of the non-profit Maine Dartmouth Family Medicine Residency in central Maine.
Collaborating organizations include The Jackson Laboratory and the Maine Medical Center Cancer Risk and Prevention Clinic. Novel aspects of this project are its primary care orientation, its location in a physician training environment, the use of a patient-completed family health history tool on tablet PCs, and the integration of telemedicine services. It is hoped that lessons learned and resources developed from this project might be useful to other primary care environments in Maine and beyond.
The Maine Dartmouth Family Medicine Residency (MDFMR) and collaborators from The Jackson Laboratory (JAX) and the Maine Medical Center Cancer Risk and Prevention Clinic (CRPC) will develop, pilot, and evaluate a structured approach to patient engagement, risk assessment and management for individuals at risk for familial cancer syndromes at Four Seasons Family Practice (FSFP, Fairfield, ME), one of three MDFMR primary care practice sites.
The collaborators will develop, implement and evaluate a year-long educational program focused on common familial cancer syndromes for residents, faculty and staff at MDFMR.
Based on experience gained from completing Aim 1, the collaborators will implement and evaluate a structured approach for risk assessment and management for individuals at risk for familial cancer syndromes at both the Family Medicine Institute (FMI, Augusta, ME) and the Maine Dartmouth Family Practice (MDFP, Waterville, ME), the two remaining MDFMR primary care practice sites. We believe that we have a unique opportunity to collaboratively develop and pilot an innovative, sustainable, structured approach to enhancing the identification, assessment, and management of individuals at risk for familial cancer syndromes within the MDFMR primary care clinics located in Augusta, Waterville, and Fairfield, ME. This project is exploratory in nature and has the potential to inform future research activities as well as the development of similar programs in primary settings in Maine and beyond. The proposed program fits well into the emphasis the Maine Cancer Foundation places on access to high quality cancer screening and prevention services for all Maine citizens. To our knowledge no similar effort has been undertaken for Maine citizens, and we are unaware of any similar ongoing projects in a primary care or family medicine residency training environment nationally.
Familial cancer syndromes are among the most common hereditary conditions encountered in primary care. Hereditary breast and ovarian cancer syndrome (HBOC) and Lynch syndrome (also known as hereditary non-polyposis colorectal cancer) combined likely affect 1 in 250 individuals in the general population (1,2). This suggests that every practicing primary care provider (PCP) actively cares for at least a few such individuals and their relatives. An estimated 10% of individuals in the general population have “red flags” in their family and personal history suggesting the need for more formal evaluation by a genetics specialist (3). In cancer patients approximately 20% have family histories suggesting need for All women with ovarian cancer are candidates for evaluation. Within the State of Maine, this translates into 133 colorectal cancer patients, 225 breast cancer patients and 97 ovarian cancer patients annually who are candidates for cancer genetic counseling and consideration of testing (4). These numbers are compounded by the risk faced by family members. Evidence suggests that a small minority of individuals with hereditary cancer syndromes are identified in clinical care – perhaps less than one in twenty (5). There is also evidence that PCPs are not well prepared or confident in their ability to identify and manage such individuals (6-8).
Failure to identify and manage individuals with HBOC and Lynch syndrome does real harm. In fact, there are a number of guidelines from prominent organizations including the United States Preventive Services Task Force (USPSTF) and Evaluation of Genomic Applications in Practice and Prevention suggesting that identification of HBOC and Lynch patients can improve outcomes through enhanced screening and preventive measures (9, 10). Though there is not universal agreement on the best approaches to ascertain individuals with HBOC and Lynch syndrome in a primary care setting, there is universal agreement that improved identification of risk is needed.
The changing primary care environment in Maine is reflective of that of the U.S., and many innovations in care delivery have been instituted in the non-profit MDFMR environment. MDFMR is New England’s oldest and largest family medicine residency training program, with over 30 residents and fellows serving much of the patient population of the Augusta/Waterville region. MDFMR has long standing ties with the non-profit health care system, MaineGeneral Health (MGH). This hospital system in central Maine provides integrated primary and specialty care services as well as access to state of the art cancer screening, prevention, and treatment. MGH has increased emphasis on screening and prevention, particularly for cancer and has established the MaineGeneral Prevention Center. Individuals in this Center (Laura St John) have been actively working in collaboration with the principal investigator (Greg Feero, M.D., Ph.D.) on enhancing screening and prevention for colorectal cancer throughout the MaineGeneral system. Additionally, MGH has recently established telemedicine (telegenetics) services with the non-profit CRPC (Susan Miesfeldt, M.D.).
MDFMR has a long history of successful collaboration regarding genomics integration into primary care with individuals from the nonprofit JAX (Emily Edelman, M.S., C.G.C. and Kate Reed, M.P.H., Sc.M., C.G.C.) and CPRC. MDFMR has previously completed a successful implementation and evaluation of a patient completed prenatal genetic risk assessment tool funded by HRSA and developed in part by E. Edelman and K. Reed in MDFMR’s three primary care practice locations (11, 12). As well, MDFMR, JAX and CPRC collaborated to develop and present the highly successful half-day CME event entitled “Cancer in the Family: Primary Care Matters” in conjunction with the 2012 annual meeting of the Maine Academy of Family Physicians funded by the Maine Cancer Foundation. The collaboration regarding cancer genetics education for primary care providers is ongoing; both S. Miesfeldt and G. Feero serve as advisors for JAX’s recently launched CME portal for genomics education (www.jaxge.org