An efficient alternative model of genetic counseling to deliver services at the Saguenay-Lac-Saint-Jean region in Quebec.
Health Services and Implementation
-
Primary Categories:
- Genetic Counseling
-
Secondary Categories:
- Genetic Counseling
Introduction:
Introduction: The regional medical genetics service located in the Saguenay-Lac-Saint-Jean region of Quebec, Canada, covers a large territory with a population of about 300,000 individuals. As is the case with most genetics’ clinics, the demand for genetic counseling (GC) services has exploded in the past few years. Cancer genetics patients’ needs have significantly increased given the importance of genetic testing results for orienting treatment or for guiding surgical decisions. Until 2021, our service declined referrals for cancer genetics, specifically for new cases of breast and colorectal cancer because of the lack of GC resources. These patients were referred to other genetic services in the province, the closest being at a distance of 200 km from our region which created a inequity of access for patients to have genetic counseling Our wait list was extremely backlogged and we were not able to respect timelines to see the patient.
Methods:
Methods: To respond to the growing demand and to offer a local service to our cancer patients, an alternative model of genetic counseling was developed. After considering different alternative service delivery models, we developed a unique method of offering group genetic counseling, which includes two distinct steps: a 30 minutes group education session, immediately followed by a one-on-one appointment with a genetic counselor to answer any personal questions, address particular aspects of their family history and discuss the consent form. Given the significant workload in organizing these groups, we integrated to our team a genetic counseling assistant (GCA) to support in the intake, triaging, and collection of relevant information like family history questionnaires, and pathology reports. After adequate training and supervision, the GCA was also tasked with presenting the educative content in the group session. These sessions are offered in person or through telemedicine with a weekly frequency. While initially conceived for the cancer genetics patients, we have since applied this model to diverse conditions by grouping affected or at-risk individuals according to the reason for referral, which include cancer genetics, cardiogenetics, hyperferritinemia, maturity onset diabetes of the young, among others. This model has been used in both the diagnostic and the predictive testing setting and for carrier testing for known familial variant, mainly for recessive conditions (ex : cystic fibrosis).
Results:
Results: To date, we have performed 103 genetic counseling group sessions, mainly for cancer genetics (58), cardiogenetics (13), preconception carrier screening (12), and others (19). This model has allowed us to evaluate 546 patients, with a maximum capacity of 12 patients seen in every session (for three GC). Not only has this model allowed us to add a new service in this region (all type of cancer genetics), but it has also significantly contributed to a decrease in the time spent on the wait list for patients, and has increased their access to timely delivered genetic counseling. Additionally, this model has allowed our service to currently be meeting the targets set out given the priority for more urgent cases. We have evaluated patients' satisfaction with the two-step model of service delivery, and most participants (95%) were comfortable with the group session and appreciated the offered model (91%).
Conclusion:
Conclusion: In summary, we present a unique model of offering group genetic counseling adapted to a regional clinic, which distinguishes itself by the genetic counseling assistant roles and the two-step design. We find that this method facilitates access to genetic counseling services and allows for time savings for patients and genetics professionals, while simultaneously producing high satisfaction for patients.
Introduction: The regional medical genetics service located in the Saguenay-Lac-Saint-Jean region of Quebec, Canada, covers a large territory with a population of about 300,000 individuals. As is the case with most genetics’ clinics, the demand for genetic counseling (GC) services has exploded in the past few years. Cancer genetics patients’ needs have significantly increased given the importance of genetic testing results for orienting treatment or for guiding surgical decisions. Until 2021, our service declined referrals for cancer genetics, specifically for new cases of breast and colorectal cancer because of the lack of GC resources. These patients were referred to other genetic services in the province, the closest being at a distance of 200 km from our region which created a inequity of access for patients to have genetic counseling Our wait list was extremely backlogged and we were not able to respect timelines to see the patient.
Methods:
Methods: To respond to the growing demand and to offer a local service to our cancer patients, an alternative model of genetic counseling was developed. After considering different alternative service delivery models, we developed a unique method of offering group genetic counseling, which includes two distinct steps: a 30 minutes group education session, immediately followed by a one-on-one appointment with a genetic counselor to answer any personal questions, address particular aspects of their family history and discuss the consent form. Given the significant workload in organizing these groups, we integrated to our team a genetic counseling assistant (GCA) to support in the intake, triaging, and collection of relevant information like family history questionnaires, and pathology reports. After adequate training and supervision, the GCA was also tasked with presenting the educative content in the group session. These sessions are offered in person or through telemedicine with a weekly frequency. While initially conceived for the cancer genetics patients, we have since applied this model to diverse conditions by grouping affected or at-risk individuals according to the reason for referral, which include cancer genetics, cardiogenetics, hyperferritinemia, maturity onset diabetes of the young, among others. This model has been used in both the diagnostic and the predictive testing setting and for carrier testing for known familial variant, mainly for recessive conditions (ex : cystic fibrosis).
Results:
Results: To date, we have performed 103 genetic counseling group sessions, mainly for cancer genetics (58), cardiogenetics (13), preconception carrier screening (12), and others (19). This model has allowed us to evaluate 546 patients, with a maximum capacity of 12 patients seen in every session (for three GC). Not only has this model allowed us to add a new service in this region (all type of cancer genetics), but it has also significantly contributed to a decrease in the time spent on the wait list for patients, and has increased their access to timely delivered genetic counseling. Additionally, this model has allowed our service to currently be meeting the targets set out given the priority for more urgent cases. We have evaluated patients' satisfaction with the two-step model of service delivery, and most participants (95%) were comfortable with the group session and appreciated the offered model (91%).
Conclusion:
Conclusion: In summary, we present a unique model of offering group genetic counseling adapted to a regional clinic, which distinguishes itself by the genetic counseling assistant roles and the two-step design. We find that this method facilitates access to genetic counseling services and allows for time savings for patients and genetics professionals, while simultaneously producing high satisfaction for patients.