Abstract
Introduction
Cancer patients often face challenges retaining critical information related to their diagnosis and treatment plans, with studies reporting retention rates as low as 11%–25%. This knowledge gap can negatively impact treatment adherence and increase patient anxiety. Visual communication tools may enhance patient comprehension and engagement in cancer care. To evaluate the effectiveness of MyCaregorithm, a novel digital tool, in improving patient comprehension of cancer treatment plans in a radiation oncology clinic setting.
Methods
Adult patients with head and neck, prostate, or pancreatic cancers were recruited during routine clinic visits. Radiation oncologists or advanced practice providers utilized MyCaregorithm to explain the diagnosis, treatment plans, potential side effects, and follow-up care. Patients completed a survey assessing their experience with the tool. Descriptive statistics were used to analyze the data.
Results
The study included patients with head and neck (69%), prostate (17%), and pancreatic (14%) cancers. Key findings include: 94% of patients reported improved understanding of treatment options 94% found visual images enhanced comprehension of their medical situation 85% experienced greater benefit compared to previous consultations without the tool 97% would recommend the tool to other patients.
Conclusion
The digital technology tool demonstrated high effectiveness in improving patient comprehension and engagement across multiple cancer types. The consistently positive response rates highlights its potential to enhance patient-provider communication in oncology settings. Further studies with larger cohorts are needed to validate these promising results.
Plain Language Summary
A novel digital education module for cancer patients: We developed a novel digital education module for use at time of initial consultation for cancer patients (head/neck, pancreas, and prostate cancer patients). This showed potential in enhancing understanding of treatment options and outcomes at the end of their visits.
Introduction
The complexity of cancer care and treatment plans often leaves patients overwhelmed and struggling to retain critical information provided during initial consultations. Research shows that patients remember only 11%–25% of the information discussed during a medical visit, with worsening recall as volume of information increases. 1 One study found that only 5% of patients had complete understanding of their prognosis and severity of their illness. 2
This knowledge gap can lead to misunderstandings, poor treatment adherence, and increased anxiety for patients and their families.3,4 Anecdotally, one author (GY) reports that explaining a complex head/neck radiation therapy plan in consultation can be challenging for certain patient populations. Healthcare providers face the challenge of effectively communicating complex oncology care plans in a way that patients can comprehend and remember. To bridge this gap, there is a growing need for better explanations and innovative approaches to patient education in oncology. Visual representations and digital technologies are emerging as powerful tools to enhance patient understanding and engagement in cancer care5,6 These technologies can provide interactive, personalized information that patients can access and review at their own pace, improving information retention and empowering patients to actively participate in their treatment decisions. As healthcare moves towards more patient-centered approaches, the integration of visual aids and digital platforms in explaining oncology care plans is becoming increasingly crucial for improving patient outcomes and overall care quality.
In response to this unmet need, we piloted a quality improvement study using MyCaregorithm, a novel digital tool designed to help providers explain cancer treatment plan to patients interactively in a patient-centered approach.
Methods
This study utilized a digital technology tool called MyCaregorithm to review patients’ diagnosis, treatment, and follow-up plans in a radiation oncology clinic setting. The study focused on patients with head and neck cancers, prostate cancers, and pancreatic cancers. The study was IRB exempt as it involved educational tools with collection of de-identified data.
Participants and Recruitment
Adult patients diagnosed with head and neck cancers, prostate cancers, or pancreatic cancers who were receiving treatment at our radiation oncology clinic were eligible for inclusion. Patients were recruited during their regular clinic visits in 2023-2024. Participation was voluntary, and verbal consent was obtained from all participants.
During a scheduled clinic visit, the treating radiation oncologist or advanced practice provider used the MyCaregorithm tool to go over each patient’s diagnosis, proposed treatment plan, expected side effects and management strategies, and follow-up care plan. The MyCaregorithm tool presented this information through interactive digital visualizations and simplified explanations. The session typically lasted 15-20 minutes and was conducted as part of the standard patient education process. A survey assessing the patient’s perspective on the MyCaregorithm tool was administered after the consultation was complete.
Data Collection
No identifiable patient information was collected for research purposes. The patient’s cancer diagnosis and response to the survey questionnaire were recorded.
Data Analysis
Descriptive statistics were used to summarize the data, including the distribution of cancer types, and percentage responses to each survey question. Given the pilot nature of the study, no formal uncertainty analyses were performed.
This study qualifies for exempt status under category 2 of the revised Common Rule, as it involves only interactions using educational tools and the collection of de-identified data through standard clinical procedures. The research presents no more than minimal risk to participants and does not adversely impact the standard of care.
Results
The study included 35 patient surveys with various cancer types, predominantly head and neck cancers (n = 24, 69%), followed by prostate cancer (n = 6, 17%), and pancreatic cancer (n = 5, 14%).
Patient questionnaires and responses by disease site.
aOne respondent did not fill out an answer.
A majority proportion (n = 30, 85%) of patients reported that the benefit they experienced with the tool was substantially greater than in previous oncology (medical, radiation, surgical) consultations where it was not utilized.
Nearly all patients (n = 34, 97%) expressed their willingness to recommend the use of this tool to other patients.
Discussion
The results of this study demonstrate the hypothesis-generating potential of visual communication tools, specifically MyCaregorithm, in enhancing patient understanding and engagement in oncology settings. The positive response from patients across 3 different cancer types suggests that such tools could play a role in addressing the long-standing challenge of effective communication in complex cancer care. 7
The percentage (94%) of patients reporting improved understanding of treatment options aligns with previous research highlighting the effectiveness of visual aids in medical communication. This finding is particularly significant given the complexity of cancer treatment plans and the typically low retention rates of medical information by patients. The proportion of patients (94%) who found the visual images enhanced their comprehension of their medical situation further underscores the tool’s efficacy in bridging the knowledge gap often experienced by cancer patients.
The fact that 85% of patients reported a benefit with the tool compared to previous visits without it is a indicator of its potential added value. This suggests that MyCaregorithm addresses a critical need in patient education that traditional methods may not fully meet. The tool’s ability to present complex information in an accessible, visual format likely contributes to this enhanced understanding. Perhaps most notable is the (97%) willingness of patients to recommend it to others. This suggests its potential for increased adoption and implementation in oncology practices.
Notably, these findings are consistent with other institutional experiences utilizing visual aids. Jambor et al investigated the use of a pictogram-based visualizations achieving 82% for comprehension and 72% for recall after several weeks. 7 Similarly, enhanced media utilizing real footage and informational sections were surveilled in an Australian radiation therapy department, with a very high percentage (98%) of useful responses, a near ½ (49%) reduction in fear/anxiety, and a significant proportion of at-home review (39%). 8
Overall, these findings are particularly relevant in the context of the growing emphasis on patient-centered care in oncology. By improving patient understanding, tools like MyCaregorithm can empower patients to participate more actively in their treatment decisions, potentially leading to better adherence and outcomes. 9
However, it is important to note the significant and multiple limitations of this study. The sample size and distribution of cancer types may not be representative of the broader oncology patient population. There was no specific controlling factor for age, education level, or digital literacy of the patients surveyed. A small fraction (2 questions in total) accounted for missing data which, which were not included in the evaluation of the questions affected. Additionally, the study did not include a control group, which limits our ability to definitively attribute the observed benefits solely to the MyCaregorithm tool. Other limitations include the survey responses based on the respondent’s perception, and variability in the presenter (in this case, an MD or APRN). An expansion of the tool’s use could potentially encompass more disease sites, as well as utilization of the tool by providers who see a more general scope of patients. Additional limitations include unforeseen bias in administration, such as individual familiarity with the tool or even intrinsic technological ability of the explaining provider. Future research should explore the effectiveness of MyCaregorithm in larger, more diverse patient populations and include longitudinal studies to assess the long-term impact of such tools on patient outcomes, treatment adherence, and overall satisfaction with care. Further expansions to include non-English language will additionally impact diverse populations, with specific inclusion of those patient populations with lesser access to technology (elderly, lower social economic status) who are most vulnerable to risk for decreased medical understanding. Additionally, specific stratification by age, education level, and in particular digital literacy are critical features for a future, larger study. It would also be valuable to explore the tool’s effectiveness in different healthcare settings and with various healthcare providers. To this end, we are planning a multi-institutional study addressing the key weaknesses of this pilot study. A formal Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guideline based trial incorporating a Likert scale and psychometric validation which represent the initial framework in which we would create the study.
In conclusion, this study provides evidence for the potential of visual communication tools like MyCaregorithm to significantly improve patient understanding and engagement in oncology care. As healthcare continues to move towards more patient-centered approaches, the integration of such tools could play a crucial role in enhancing the quality of cancer care and patient outcomes.
Conclusion
These results suggest that the visual communication tool was highly effective in improving patient understanding and engagement across different cancer types. The consistently high positive response rates across all survey questions underscore the tool’s potential to enhance the quality of patient-provider communication in oncology settings. This pilot study should be significantly expanded upon in a larger and more robust multi-institutional study.
Supplemental Material
Supplemental Material - Impacts of a Novel Digital Education Module for Oncology Patients: A Prospective Experience
Supplemental Material for Impacts of a Novel Digital Education Module for Oncology Patients: A Prospective Experience by Anupam Rishi, Sonia Adamson, and George Q. Yang in Cancer Control
Footnotes
Ethical Considerations
This project was deemed exempt from scientific review committee review/IRB exempt per institutional policy on 3/16/2022. Participation was voluntary, and verbal consent was obtained from all participants.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
Research data are stored in an institutional repository and will be shared upon request to the corresponding author.
Supplemental Material
Supplemental material for this article is available online
References
Supplementary Material
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