Hepatitis C and Your Transplant
Roxanne Ziman, Nikki Marks,
Abstract A 2D-animated educational video was developed to help educate organ transplant candidates and their caregivers about organ donation from hepatitis C-positive donors. This new protocol at Toronto General Hospital (TGH) included an animation designed to augment the informed consent process. Patient feedback on the final iteration gave insight into the clarity and efficacy of the communication and the visual style of this animation. The authors found that patients were receptive to the use of this visual aid during the informed consent process.
Direct-acting antiviral (DAA) drugs in recent years have made it possible to cure organs infected with HCV and safely use them in transplantation, addressing the chronic shortage of donor organs1,2. Critical wait list times for patients can be reduced, thereby decreasing the risk of wait list mortality1,3. However, poor understanding of the associated risks of HCV infection and the stigma surrounding HCV result in low willingness to accept HCV-positive organs4-6.
To address this problem, an animation was created to educated transplant candidates and their caregivers about a new protocol at TGH for treating HCV-positive organs with a success rate of over 95%1. The video explains the clinical protocol, treatment, and follow-up schedules. Importantly, it remediates common misconceptions associated with the risk of HCV infection and transmission post-transplant.
The informed consent process traditionally involves providing patients with written documents that are lengthy and often contain complex language. This creates a barrier for patients to understand all the information relevant to their medical care, and therefore give truly informed consent. Enhancing patient education by providing a visual aid as an adjunct to lengthy written documents in the informed consent process may improve patient understanding and confidence, as patients are offered a new format for learning that improves understanding and recall. Currently, no visual resources for patient education about HCV exist at TGH. This visual aid makes the information more accessible and easy to digest for patients and their caregivers. Visual designed to enhance decision-making during the informed consent process are becoming increasingly recognized as a core application of patient-centered care7.
Materials and Methods
The script and storyboard were created after consultation with the clinical expert, Nikki Marks. Written documents about HCV (which are provided to transplant candidates during informed consent) also served as a reference for the animation content. An important piece to capture in the animation was the visualization of the medication schedule.
All graphics in the animation were done in 2D. No complex spatial relationships are explained, and the target audience are patients who vary in their level of health literacy. Therefore, we determined that simple, clean 2D graphics would make the animation more accessible and would mitigate cognitive load for patients, who already may be experiencing a high level of stress. The main character design was suggested by a real-life transplant patient and advocate. Background characters were designed to be diverse and inclusive. Environments were done in a painterly style to create a warm atmosphere.
Adobe Illustrator was used for building assets including the main character. Adobe Photoshop and Savage Procreate were used to render the background environments and characters. After Effects was the primary software for the animation and final rendering.
A survey was developed to solicit feedback on the final iteration of the animation. It was sent to eight participants in the Patient Partners Program at UHN, and responses were collected between August - September 2020. Using a combination of Likert scales and written feedback, the survey assessed the degree to which participants felt the animation clearly explained HCV infection and transmission, as well as patients' responses to (and preference for) the visual style.
To view the complete results of this study, select the above image or this "PDF" link.
This Vesalius Trust research poster was presented during the Association of Medical Illustrators' 2020 Virtual Conference.
ConclusionPatient feedback indicates the animation is generally useful for understanding what HCV is, and for explaining how HCV is (and is not) transmitted post-transplant. Participants commented that the visual style was clear, effective, and visually pleasing. Further, patients were responsive to, and excited about, the use of such visual communication aids to improve understanding and confidence in this life-saving procedure. Further study is required to assess the efficacy of this visual aid when used in conjunction with written documents to improve patient understanding and confidence, as opposed to the use of written documents alone.
The author acknowledges the Vesalius Trust which awarded a Research Grant for this project, and in-kind support from the Biomedical Communications Program at the University of Toronto.
1. Feld, J. J., Cypel, M., Humar, A., Kumar, D., K., Singer, L., Schiff, J., Kim, J., McDonald, M., & Keshavjee, S. (2019). Transplantation using hepatitis C positive donors to hepatitis C negative recipients: A safety trial. (ClinicalTrials.gov Identifier NCT04017338).
2. Khan, B., Singer, L. G., Lilly, L. B., Chaparro, C., Martinu, T., Juvet, S., … Cypel, M. (2017). Successful Lung Transplantation From Hepatitis C Positive Donor to Seronegative Recipient. American Journal of Transplantation, 17(4), 1129–1131. https://doi.org/10.1111/ajt.14137
3. Cox, M. L., Mulvihill, M. S., Choi, A. Y., Bishawi, M., Osho, A. A., Haney, J. C., … Hartwig, M. (2019). Implications of declining donor offers with increased risk of disease transmission on waiting list survival in lung transplantation. Journal of Heart and Lung Transplantation, 38(3), 295–305. https://doi.org/10.1016/j.healun.2018.12.012
4. Humar, S. S., Liu, J., Pinzon, N., Kumar, D., Bhat, M., Lilly, L., & Selzner, N. (2019). Attitudes of Liver Transplant Candidates Toward Organs From Increased-Risk Donors. Liver Transplantation, 25(6):881-888. doi: 10.1002/lt.25467.
5. Ros, R. L., Kucirka, L. M., Govindan, P., Sarathy, H., Montgomery, R. A., & Segev, D. L. (2012). Patient attitudes toward CDC high infectious risk donor kidney transplantation: Inferences from focus groups. Clinical Transplantation, 26(2), 247–253. https://doi.org/10.1111/j.1399-0012.2011.01469.x
6. Sise, M. E., Wojciechowski, D., Chute, D. F., Gustafson, J., Chung, R. T., Williams, W. W., & Elias, N. (2019). Process of Selecting and Educating HCV Uninfected Kidney Waiting‐List Candidates for HCV infected Kidney Transplantation. Artificial Organs, 43(9):913-920. doi: 10.1111/aor.13473
7. Garcia-Retamero, R., & Cokely, E. T. (2013). Communicating health risks with visual aids. Current Directions in Psychological Science, 22(5), 392-399.
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Conflict of Interest Statement
The Journal of Biocommunication Management Board and Editors believe that transparency in academic research is essential. Our JBC authors are now required to disclose any possible conflict of interest when submitting a manuscript. In accordance with the Journal of Biocommunication's editorial policy, no potential conflict of interest has been reported or declared by this author.