Genetic Counselling Research at the BC Psychosis Program

By Prescilla Carrion and Ashley DeGraaf

Genetic counselling is, according to the National Society of Genetic Counsellors, the process of helping people understand and adapt to the medical, psychological, and familial implications of the genetic contributions to disease. Psychiatric genetic counselling is a specialized field of genetic counselling that aims to help people with a personal or family history of mental illness understand the causes so that they may better adapt to and cope with the illness. This involves providing information about the environmental and genetic causes of mental illness and discussing evidence-based strategies for promoting mental health such as lifestyle modifications, nutrition, managing stress, and the role of medications. As this conversation unfolds, the genetic counsellor addresses the psychological impact of the illness and the information shared, provides support and suggests resources. If desired by the patient, the genetic counsellor can also discuss the chances of recurrence of the disorder in the family

Psychiatric genetic counseling services in British Columbia are available to all residents of British Columbia with a personal or family history of mental illness through The Adapt Clinic in the Department of Medical Genetics at BC Women’s Hospital and are fully covered by the BC Medical Services Plan. In 2015, an evaluation of The Adapt Clinic by Inglis et al. demonstrated that psychiatric genetic counseling enhances empowerment and self-efficacy in people with psychiatric disorders and their family members. Empowerment can be defined as one’s sense of control over an illness and hope for the future, while self-efficacy is one’s confidence in the ability to manage an illness. In other words, the study suggests that psychiatric genetic counseling gives patients and family members a greater sense of control over the illness and hope for the future, as well as increased confidence in managing their illness.

Prescilla Carrion and Ashley DeGraaf are certified genetic counselors at UBC Hospital who have been integrated into the BC Psychosis Program to provide psychiatric genetic counseling to patients and their family members through research.  Prescilla Carrion is a UBC genetic counselor and clinician investigator within the UBC Institute of Mental Health Centre for Care and Research. She is leading this research aimed to build evidence for psychiatric genetic counseling among patients with treatment-resistant psychosis and their family members.  As the principal investigator on the study titled “Evaluating the value of integrating genetic counseling into mental health services,” she is using validated clinical outcome measures to assess the impact of psychiatric genetic counseling in this population and aims to identify whether similar increases in empowerment and self-efficacy in mental health management can be observed and maintained as compared to the findings in the evaluation of The Adapt Clinic. She has also developed a survey, in collaboration with Drs. Jehannine Austin and William Honer, to assess clinician perspectives on how genetic counseling may have impacted the care they provide to their patients and interactions with the family members with the goal of understanding how best to engage mental health clinicians in recommending genetic counseling for their patients/clients. This research will provide the first outcome data on the effect of genetic counseling for inpatients with treatment-resistant psychosis, and on outcomes of genetic counseling when integrated into a multidisciplinary mental health program outside of a medical genetics clinic setting.

If you have a personal or family history of mental illness and are interested in psychiatric genetic counseling, you may self-refer to The Adapt Clinic by calling Angela Inglis at 604-875-2726, or Emily Morris at 604-875-2000 ext. 6787, or you may request a referral through your family doctor, psychiatrist, or other mental health clinician. A searchable directory of genetic counselors and genetic counseling services in Canada and the United States is available through the Canadian Association of Genetic Counsellors and the National Society of Genetic Counselors.

Welcome!

The B.C. Psychosis Program at Detwiller Pavilion, UBC hospital, admitted its first patients on Feb 23, 2012. As heir to the Refractory Psychosis ward at Riverview Hospital, the program accepted nine patients from Riverview who were not yet ready to go home. Since then, patients have been admitted from Fraser Health, Vancouver Coastal Health, and Vancouver Island. We have space for patients from Interior and Northern Health Authorities and look forward to referrals from those regions. We have a presence on the Web and our referral forms are available for download.

Many people played a role in organizing the program and helping in the transition from Riverview to UBC Hospital. I was selected to be medical director in December 2011 well after this process was underway. I have not even met some of the people who were instrumental in making the program come together in February with the infrastructure and personnel we need to function. Although I risk offense by leaving some important names out, I want to thank certain people for helping me as I took on this job. They include Bill MacEwan whose counsel has been invaluable, Carole Rudko and Derek Lyons for all the work they’ve done in hiring and training our staff, and Leslie Arnold whose vision and personal interest in this project have made it possible. Sean Flynn, Diane Fredrikson and Veerle Willaeys are physician colleagues who are working to make our clinical program excellent. Bill Honer, Laura Case and Soma Ganesan have provided vital advice and support to me and our team. The steering committee, which includes people from all Health Authorities, continues to meet monthly and is our conduit to the province.

Creating a provincial resource in the ivory tower of UBC is a challenge given the distance to places like Campbell River, Terrace and every other town in B.C. where people and families are affected by severe psychosis. The B.C. Psychosis Program needs to be accessible to them just as it is to people in Vancouver. But the benefit of being at UBC is the ability to attract excellent staff and to create a site for significant research on treatment-resistant psychosis.