Taking CHARGE: An Investigation of Audiologists’ Familiarity with CHARGE Syndrome and Hearing Healthcare Guidelines Pertaining to Syndrome Management

April 4, 2021   /  

Name: Caitlyn Menolasino
Major: Communication Sciences and Disorders
Advisor: Dr. Donald Goldberg

This study investigated audiologists’ familiarity and experiences with pediatric patients with CHARGE syndrome as well as audiologists’ familiarity with previously published guidelines related to hearing healthcare for syndrome management. Recruitment messages, which included a link to an electronic survey, were posted to Special Interest Groups of the American Speech-Language-Hearing Association, as well as sent directly to institutional members of the American Cochlear Implant Alliance and Children’s Hospitals across the nation. Several conclusions resulted from this study, some of which included the following: audiologists lacked familiarity with the two previously published guidelines investigated in this study; audiologists’ confidence in their hearing care and counseling abilities increased if they were familiar with guidelines for cochlear implantation for CHARGE syndrome; and outcomes of pediatric patients with CHARGE syndrome were reported by participating audiologists to be highly variable. This study demonstrated the need for increased accessibility to health guidelines and information to allow for audiologists, and other healthcare professionals, to have an increased familiarity with “rare” diseases that they are unlikely to routinely encounter. It is of utmost importance that audiologists be familiar with and have access to guidelines for the management of CHARGE syndrome, and other rare diseases that they may encounter, in order to ensure that their pediatric patients receive the necessary clinical treatment and have care provided in the most appropriate and efficient manner.

Keywords: CHARGE syndrome, rare disease, audiology, guidelines, hearing healthcare, syndrome management


 
Caitlyn will be online to field comments on April 16:
4-6 pm EDT (PST 1pm-3pm, Africa/Europe: late evening)

32 thoughts on “Taking CHARGE: An Investigation of Audiologists’ Familiarity with CHARGE Syndrome and Hearing Healthcare Guidelines Pertaining to Syndrome Management”

  1. Congratulations, Caitlyn! What was your biggest takeaway from your IS experience outside of the conclusions of your study?

    1. Thank you so much, Dr. Martin! My biggest takeaway from IS outside of my conclusions was how to effectively communicate with professionals in the field. It was nice to see how many of my contacts emailed me to tell me they were sending it on to their coworkers and how many wished me good luck with my study, which certainly reassured me that I am entering a field filled with so many compassionate people.

    1. Thank you for all of your help and support throughout this project, Dr. Goldberg!

  2. Congratulations! It is not easy to access professionals for the purpose of research, and your efforts to do so will help the field and thus, families!

    1. Thank you! It was certainly harder than I expected to find and contact professionals for my research, but it certainly paid off. I am excited to see the impact this research may have on the field!

  3. I loved learning about your research and conclusions! Congratulations on this BIG accomplishment! I’m very proud of you and your hard work!

    1. Thank you for everything over the past four years, Kate! I would not have made it this far without you!

  4. A very interesting project Caitlyn, and nicely done! I’m pleased to see that you received a good response from audiologists in the field. I have several patients with CHARGE in my caseload and was delighted to see your request for input earlier this year. It seems like this is a syndrome that all audiologists should have greater understanding of. Thank you for highlighting the need! I hope at some point this information can be shared with the audiology community. Good job!

    1. Thank you! I completely agree that audiologists should have a greater understanding of CHARGE Syndrome. I will certainly explore ways to share it with the audiology community to highlight the needs of this population!

  5. Congratulations Caitlyn on a great project! What skills have you gathered from your IS that you will take with you post-Wooster?

    1. Thank you Dr. Colvin! I have gathered so many skills from IS. Looking to the near future, I will definitely take the knowledge of the research process with me as a research assistant in graduate school. I will assist with finding and reviewing literature, recruiting participants, and collecting and analyzing data–all things that I am well prepared for thanks to IS. I also think that the persistence I have had to show through IS and the confidence I have gained from completing IS will serve me well post-Wooster.

    1. Thank you so much for all of your help (and the laughs), Tessa! Give a big thank you to Nova and Hubble as well! 🙂

  6. Thank you for helping me to learn more about CHARGE syndrome Caitlyn! I enjoyed being your second reader! Congrats!

  7. Congrats, Caitlyn! I loved getting to read about your topic, considering we didn’t get to talk about it throughout this year. Super important work

    1. Thank you so much, Rhiannon! Definitely wish we could have spent some time together on campus to talk about our projects since I know how passionate we both were (and still are!!) about our topics. Can’t wait to see everything you do beyond Wooster! Miss you!

  8. Congrats, Caitlyn! I loved reading your poster and can’t wait to read more about your work! (Signing on behalf of all of AT family who misses you very much.)

  9. Awesome work! This was super interesting, I have loved watching this topic grow as your research developed! Great job!

  10. Congratulations!! So proud of you and how far this project has come! It’s insane to think only 1.5 years ago we were sitting in our dorm stressing out over a topic. Can’t wait to see what comes for you in the future! Miss you!

    1. Thank you, Katie! Time flies when you’re having fun (or stressing…maybe both??)!

  11. So proud to see the final product and report of your IS project, it is truly an important and impressive project which adds to the profession. Certainly worth pursuing presentation at a national Audiology conference or publishing in professional journal! Great to see your passion and interest shining through this year!

  12. Caitlyn!

    This work is very important to the future of CSD! I am so proud of you!

    Did any of your findings surprise you?

    1. Laura!! Thank you so much!

      My most surprising finding, without a doubt, was the significant relationship between one’s familiarity with the guidelines for cochlear implantation in CHARGE syndrome and clinicians’ confidence in their ability to provide hearing care and counseling. This wasn’t something I had planned on doing a statistical test on, but my second reader suggested it, and I am so glad she did! It is super exciting to know that having access to information does have a positive impact in the field, and is something that I think current students and clinicians can benefit from having access to.

      I was a bit surprised by the variability in outcomes. The literature had said there was a wide spectrum but I definitely was not expecting a participant to respond to a question about auditory outcomes by saying that one of their patients had a normal ear! I think it attests to the flexibility one must have as a clinician and the importance of individualized care.

  13. Wow!! I am so impressed with your topic selection, your research and your findings. During my 25 years as an early childhood intervention specialist, I have worked with children who have had some rare conditions but CHARGE syndrome is new to me. Thanks for sharing your results!

    1. Thanks, mom! I had never heard of CHARGE syndrome prior to working on this project, either, but am glad that I know about it now! Thanks for all of your support!

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