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Help researchers understand patient burnout searching for a diagnosis
Have you experienced feelings of burnout while searching for a diagnosis?
People often describe being a patient as a part-time or full-time job. Burnout is when this work leads to
- exhaustion
- frustration and cynicism
- feeling that the effort you put in has little impact
- apathy or detachment
- dread
Working with Mayo Clinic, a student researcher, Simone Hetherington (smhethering@uncg.edu), at the University of North Carolina at Greensboro is studying burnout that patients experience as they seek a diagnosis. By interviewing people, the research team hopes to better understand real life experiences with burnout while searching for a diagnosis. They also plan to create a visual map of findings (called a conceptual model) with the help of participants in 2024.
Researchers want to hear about your current or past experiences of burnout during the search for a diagnosis.
Participation involves one-on-one interviews (60 to 120 minutes) online using Zoom or Microsoft Teams. You also have the option to join a focus group to create a visual map of findings (2.5 hours; option for virtual attendance).
To participate, you must have seen a geneticist or genetic counselor in the past, or you must be scheduled to see one in the future. Caregivers and parents are ineligible to participate in this particular study.
Interested?
Please click the link and complete the 10-minute survey to see if you are eligible:
https://uncg.qualtrics.com/jfe/form/SV_1U2UBr376oEoDsy
For people taking part in the interview, an honorarium will be provided as gratitude for your time.
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Have you experienced feelings of burnout while searching for a diagnosis?
Researchers from Mayo Clinic and University of North Carolina want to hear about your current or past experiences of burnout during the search for a diagnosis.
To participate, you must have seen a geneticist or genetic counselor in the past, or you must be scheduled to see one in the future. Read more (https://connect.mayoclinic.org/discussion/help-researchers-understand-patient-burnout-searching-for-a-diagnosis/)
Interested?
If you want to help researchers understand patient burden and risks of burnout, click the link below and complete the 10-minute survey to see if you are eligible:
https://uncg.qualtrics.com/jfe/form/SV_1U2UBr376oEoDsy
If eligible, researcher Simone Hetherington (smhethering@uncg.edu) will contact you to schedule an interview.
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5 ReactionsHow do I go about seeing a geneticist ?? Does Medicare insurance pay for seeing one? I’d def love to be apart of this study
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2 ReactionsHi @ajw1, here's more information about genetic testing and care at Mayo Clinic
- Genetic testing https://www.mayoclinic.org/tests-procedures/genetic-testing/about/pac-20384827
If you are not a Mayo Clinic patient, you can also use this website to find a genetic counselor in your area from the National Society of Genetic Counselors (NSGC):
https://findageneticcounselor.nsgc.org/
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2 ReactionsI'm with @ajw1 on this topic per how to find a geneticist ... my first thought was someone needs to do more of this in general.... glad to see th topic being pursued at all !
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6 ReactionsMy psych provider conducted genetic testing on me to try to find out what medications might be helpful. It was inconclusive.
Is this the kind of testing you are referring to?
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1 ReactionYes, @dfb. You might also be interested in this related discussion:
- Why Genetic Testing for Mental Health Meds is Important
https://connect.mayoclinic.org/discussion/why-genetic-testing-for-mental-health-meds-is-important/
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3 ReactionsI just signed up. I'm currently trying to get my adverse reaction to Letrozole addressed. Other women on this site had the same experience I did. It took weeks to get my severe adverse reaction to the steroids I was infused with addressed as something other than "depression," which obviously does not explain 72 hours of cold sweats after each infusion. That's on a par with calling me "hysterical," which they did not do but might as well have. I was not told that docetaxel was in a solution of ethanol, which caused me to be drunk after 13 years of sobriety. Good thing I wasn't driving. I couldn't even walk out on my own steam after infusion, and did not know why until after my 3rd infusion, when I Googled "drunk" and "chemo." Although the docs keep saying "all patients are different," I'm pretty sure mainlining ethanol has a predictable effect. Thank God my husband always drove. Involuntary intoxication is a defense to drunk driving or intoxication manslaughter -- but not so for civil liability for the medical providers, so it is in the providers' best interests to give patients that information out of prudent self-interest if nothing else. Even oncologists who get breast cancer are surprised by the patient experience, so clearly they didn't listen to their own patients. That disgusts me, particularly when those oncologists monetize their cancer patient experiences by creating Youtube channels and writing books. What about all those women they did not listen to?
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3 ReactionsIt’s horrible even with a diagnosis. My doctors don’t interface, so I have e to explain everything every single time. I’ve even had multiple labs ordered- all the while stating: I just had SIX tubes of blood taken yesterday. It’s NUTS I think there’s some misogyny here- not purposefully but stil
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4 Reactions