In the era of genomic medicine and the easy availability of direct-to-consumer genetic tests, patients are now more knowledgeable and forming strong perceptions or views about these tests. Although the perceptions of psychiatric pharmacogenetic testing are increasingly favourable among adult patients and the public, there is also the fear of privacy, genetic data being misused, incidental findings, and the costs associated with these tests, which are labelled as barriers to widespread implementation of these tests into practice. To our knowledge, only one study (n = 17) assessed children or youth’s understanding and perception of psychiatric pharmacogenetic testing. The same group also assessed parental understanding and attitudes following pharmacogenetic testing in their kids (aged 12-19 years, n = 18). Both studies were conducted in the USA; hence, whether Canadian youth and parents share these perceptions/attitudes is unclear. In addition, these studies were conducted with parents and their kids who have already had pharmacogenetic testing. Therefore, to address this knowledge gap, we propose to co-develop a qualitative study protocol with Manitoba youth aged 15 to 24 years and parents of youth with mental health conditions to understand knowledge, perceptions, and attitudes about the use of pharmacogenetic testing in mental health care. The age range of 15 to 24 years was chosen to reflect the age groupings of youth in the 2020 Canadian Perspectives Survey Series. We will recruit youth with lived/living experience of mental health conditions and parents of youth with lived/living experience of mental health conditions who are interested in or have had pharmacogenetic tests done (for the kids).
Objectives and Aims: The proposed study aims to co-develop a qualitative study protocol to understand the knowledge, perceptions, and attitudes about the use of pharmacogenetic testing in mental health care among children/youth and parents of children with mental disorders in Manitoba.
The following objectives are proposed:
To co-develop a qualitative study protocol to understand knowledge, perceptions, and attitudes about the use of pharmacogenetic testing in mental health care in partnership with advisory councils consisting of Manitoba youth aged 15 to 24 years and adult parents of youth (aged 15 to 24 years) with lived or living experience with mental health conditions.
To evaluate the effectiveness of the process of engagement of the advisory councils using a modified version of the Public and Patient Engagement Evaluation Tool (PPEET) (Abelson and PPEET Research-Practice Collaborative 2018).
To form future partnerships with Manitoba youth and parents of youth with lived or living experience with mental health conditions to engage in our related pharmacogenetics work, including future grant applications and implementation efforts in Manitoba.
Team:
Principal Investigator: Abdullah Al Maruf, PhD, M.Pharm (University of Manitoba) Anna Chudyk, PhD, MSc (University of Manitoba)
Co-Investigators: Laurence Katz, MD, FRCPC (University of Manitoba) Cara Catz, MD, FRCPC (University of Manitoba)
Collaborator: Brianna Hunt, MA (CHRIM)
Research Assistants: Grace Pilkey, PharmD Student (University of Manitoba) Sasha Kullman, PhD Student (University of Manitoba) Nuzhat Tabassum, MSc Student (University of Manitoba)
Recruitment materials are prepared by Grace Pilkey.