User Experiences of Pharmacogenomic Testing and Opinions among Psychiatry Patients
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Participants
2.2. Facilitators
2.3. Focus Group Guide Design
2.4. Procedure
2.5. Data Analysis
3. Results
3.1. Barriers and Unmet Needs
3.1.1. Need for Improved Education and Knowledge Mobilization for Health Service Providers
“It would be nice to have a one-on-one with somebody who’s a little deeper into the testing and the research that could say ‘hey, this is where we’re at, this is what we found out about you”
3.1.2. Need for Education and Effective Knowledge Translation Regarding PGx among Test-Users, and Members of the Public
“I think if this [PGx testing] were made available to patients, one of the things that would be required would be like, an information sheet in terms of how this information is useful.”
“If something can be tested, then, you know, it’s a molecular thing. Like, it’s not mental, it kinda destigmatizes mental illness to a certain degree.”
“I didn’t really learn any of this in school, but like…it’s more symptoms [of mental illness] that I feel like are being taught in school, but not really the science behind it. And I know that there’s both….It’s a lot easier for people to understand in order to destigmatize mental health.”
3.2. Cost Considerations
“I think it should be funded by the government, because I think there’s costs to the healthcare system for, if you’re on medications that aren’t working, there’s costs to the healthcare system—more frequent doctor’s visits, there may be socioeconomic costs, societal costs.”
“This could potentially be… the first step to recovery, which I think would, you know, limit some of the costs that people are already paying, that their tax money is already going towards.”
“I’d want a larger cohort first. You know?... I’d want more data before making a judgment.”
“I agree with that…if there were some hard facts that came out, of success and positives, then I wouldn’t mind it being paid as a taxing thing because there’s so many people suffering from depression, and there’s so many people that can’t even afford, there’s some, there’s people on the street who are suffering from depression and it should just be accessible to everybody. So, I wouldn’t mind the masses, once it’s proven information, to be able to access this….But, once it’s accurate, you know.”
3.3. PGx Results-Sharing and Accessibility
“Ultimately, at the end of the day, it’s your results, your test, your genetics going into it. So, you should be able to have the right to make decisions on where you want to put that.”
“It would be nice to have a psychiatrist be able to communicate with a GP, and both of them have some ideas”
“I think that the control [over results-sharing] should be up to the patient.”
3.4. Clinical Utility (Generalizability)
“I can honestly say it’s the first time I ever took a drug without side effects”
“I’ve been on antidepressants since 2004, and every antidepressant that I had been on up until then, except the one I’m currently on, was on the red list”
“I got the test, and when I looked at the range, the medications I was taking before were all in the red”
“I’m giving it all the time it’s going to take to get through the medication”
3.5. Prospective Benefits
“I tried several medications…and when I first tried them, I couldn’t even deal with them. I just said no. I stopped because of the side effects.”
“I can honestly say it’s the first time I ever took a drug without side effects…it was awesome.”
“It helped me a lot with the dosage, like my results said that I had an ultrarapid metabolizer, so right now, the medication I’m on, I’m on the highest possible dose, and I was less hesitant to go to one of the higher doses because I know that I metabolize it faster.”
“Even though it didn’t provide me with any information that could be useful, I would still do the test in a second…it just gives you a little bit more control in terms of knowing which meds are not considered the best for you and which ones could [be] potentially. Even the potential of having the medication show up on that list was good for me.”
“I think that it is gonna give a lot of people hope. I think I heard recently that it takes like seven medications on average before you find the right medication. So, this could potentially alleviate some of that.”
“Even though the research isn’t complete [and is] in its initial stages, it gives you a bit of hope and a bit of a compass…to start with, and maybe save me…from all that time where I don’t want to be.”
3.6. IMPACT Experience
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A. Focus Group Questions
- This question directly solicits feedback from participants re: their experience in the IMPACT study. From this question, we can have a better understanding of the overall experience of the testing process.
- From this question, we wish to learn about what, if anything, participants enjoyed about the process of being tested. This information will help us identify the patient need for pharmacogenomic testing.
- From this question, we wish to learn about any negative experiences the participants endured during the process of being tested. This information will help us identify potential areas for improvement/barriers to be navigated prior to implementation of pharmacogenomic testing.
- As the number of commercially available pharmacogenomic tests increases, patients can expect to see a diverse range of price points. This question directly relates to best practices for implementation of pharmacogenomic tests; with this information, we hope to get an estimate of the most realistic amount that target users of pharmacogenomic tests can afford to pay out-of-pocket. This information has significant implications for future policy (e.g., by government or insurance companies) regarding reimbursement for pharmacogenomic testing.
- Consideration of a realistic but effective implementation strategy is an important aspect of translational research. The Canadian healthcare system is provincially regulated. We want patients to understand that, should they wish to have pharmacogenomic testing reimbursed by the government, this could result in increased taxes. With this information, we may better understand reimbursement from the patient’s point of view.
- This question relates both to identification of the patient need and the development of an effective implementation strategy. We wish to better understand how results from pharmacogenomic testing may be best distributed to optimize patient benefit. This information has implications for policy development that includes everyone in a patient’s healthcare team.
- Access to effective services is a key issue for patients seeking mental healthcare. This information will allow us to identify and understand some of these key issues to patients’ ability to access pharmacogenomic testing. We may then develop approaches to addressing these issues.
- This question gives participants an opportunity to share any additional factors that they think are important to consider regarding implementation of pharmacogenomic testing. This information may contribute to recommendations to government and other key stakeholders for a patient-centred implementation strategy.
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1-How long did you participate in the study (IMPACT), and how would you describe your experience? |
2-What are some benefits that you (personally) experienced from the test? |
3-As a participant, did you have any concerns or difficulties with the test? |
4-Please indicate the maximum amount you’d be willing to pay for this test out-of-pocket. |
5-Would you support an increase in taxes for pharmacogenetic testing to be subsidized by the government? |
6-Who needs to have access to the genetic test results for it to be the most effective for your care? |
7-What could be some barriers to your ability to access a pharmacogenetic test? |
8-If you oversaw making pharmacogenetic testing available to the public, what do you think would be the most important things to consider? |
Characteristic | Participants |
---|---|
Gender | |
Female | 8 |
Male | 3 |
Age | |
18–29 | 3 |
30–49 | 3 |
50–64 | 4 |
65+ | 1 |
Ancestry | |
European | 9 |
East Asian | 2 |
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Share and Cite
Virelli, C.R.; Ebrahimi, M.; Mohiuddin, A.G.; Tomasi, J.; Lisoway, A.J.; Herbert, D.; Marshe, V.S.; Kidd, S.A.; Ferenbok, J.; Kennedy, J.L. User Experiences of Pharmacogenomic Testing and Opinions among Psychiatry Patients. J. Pers. Med. 2024, 14, 22. https://doi.org/10.3390/jpm14010022
Virelli CR, Ebrahimi M, Mohiuddin AG, Tomasi J, Lisoway AJ, Herbert D, Marshe VS, Kidd SA, Ferenbok J, Kennedy JL. User Experiences of Pharmacogenomic Testing and Opinions among Psychiatry Patients. Journal of Personalized Medicine. 2024; 14(1):22. https://doi.org/10.3390/jpm14010022
Chicago/Turabian StyleVirelli, Catherine R., Mahbod Ebrahimi, Ayeshah G. Mohiuddin, Julia Tomasi, Amanda J. Lisoway, Deanna Herbert, Victoria S. Marshe, Sean A. Kidd, Joseph Ferenbok, and James L. Kennedy. 2024. "User Experiences of Pharmacogenomic Testing and Opinions among Psychiatry Patients" Journal of Personalized Medicine 14, no. 1: 22. https://doi.org/10.3390/jpm14010022
APA StyleVirelli, C. R., Ebrahimi, M., Mohiuddin, A. G., Tomasi, J., Lisoway, A. J., Herbert, D., Marshe, V. S., Kidd, S. A., Ferenbok, J., & Kennedy, J. L. (2024). User Experiences of Pharmacogenomic Testing and Opinions among Psychiatry Patients. Journal of Personalized Medicine, 14(1), 22. https://doi.org/10.3390/jpm14010022