A Cross-Sectional Examination of Information Disclosure and Health Literacy Amongst Patients with Lymphoma
Authors: SE Kalloger¹, A Watson¹, S Sajkowski¹, N Bolaños², L Warwick²
¹Department of Research & Information, Lymphoma Coalition, Mississauga, ON, Canada
²Management, Lymphoma Coalition, Mississauga, ON, Canada
Introduction
Lymphoma Coalition (LC) supports over 90 member organizations across more than 55 countries. LC’s overarching vision is equity in lymphoma outcomes across borders.
Health literacy of patients is a requirement for shared decision making. However, little is known about the experiences of patients with lymphoma with regard to health literacy and information disclosure from their treating physicians.
We sought to explore health literacy through a survey deployed across a large and diverse group of patients with lymphoma.
Methods
The 2022 Lymphoma Coalition (LC) Global Patient Survey (GPS) was completed by 7,113 patients from 84 countries. We sought to understand how patients initially understood their disease.
Responses to the question:
“To what extent, if at all, were diagnostic tests and results explained to you?”
Responses were stratified across core demographics and tabulated. Tests for significant differences across strata were computed with JMP Pro v17.
Results
Overall Findings
- Of the 6,684 respondents who indicated a level of satisfaction or dissatisfaction with regard to the comprehension of diagnostic and laboratory tests, 58% were males and 42% were females.
- The median age was 60 years, with a range of 18–97 years.
Biological Sex Comparison (Figure 1)
- They were explained, and I understood the information (n=4257): 50% Female | 50% Male
- They were explained, but I did not understand the information (n=996): 58% Female | 42% Male
- They were not explained well, and I did not understand (n=765): 64% Female | 36% Male
- They were not explained at all (n=742): 71% Female | 29% Male
Regional Comparison (Figure 2)
North America (n=1206)
- Not explained at all: 8.4%
- Not explained well, did not understand: 9.9%
- Explained, but did not understand: 10.1%
- Explained, understood: 71.6%
Europe (n=3278)
- Not explained at all: 11.3%
- Not explained well, did not understand: 8.9%
- Explained, but did not understand: 11.0%
- Explained, understood: 68.7%
South America (n=717)
- Not explained at all: 12.7%
- Not explained well, did not understand: 8.2%
- Explained, but did not understand: 15.1%
- Explained, understood: 63.4%
Middle East & Africa (n=134)
- Not explained at all: 17.6%
- Not explained well, did not understand: 14.9%
- Explained, but did not understand: 5.9%
- Explained, understood: 61.8%
Asia-Pacific (n=1205)
- Not explained at all: 8.9%
- Not explained well, did not understand: 17.5%
- Explained, but did not understand: 20.9%
- Explained, understood: 52.7%
Results (Continued)
- Overall, 36% of respondents reported poor comprehension.
- Increasing age was a significant positive predictor of health literacy (Range OR = 6.9 [5.4–8.9]).
- Male biological sex was a significant predictor of improved comprehension (OR = 1.5 [1.3–1.6]).
- Regional disparities were identified:
- North America: 72% satisfactory comprehension
- Europe: 68% satisfactory comprehension
- Asia-Pacific: 53% satisfactory comprehension (p < 0.0001)
Table 1. Average Age of Patients by Explanation Level
- They were not explained at all → 55 years
- They were not explained well, and I did not understand → 51 years
- They were explained, but I did not understand → 53 years
- They were explained, and I understood → 59 years
Conclusion
One of the goals of precision medicine is to deliver the right therapeutics to the right patient at the right time.
Shared decision making has the ability for patients to provide valuable feedback to their treating physicians. However, a lack of health literacy essentially excludes patients from participating in the decision-making process.
All three demographics examined above indicated highly significant disparities that can have adverse ramifications on healthcare equity.
We feel that patients should understand their disease and the available treatment options, which will yield increased participation in their care.
Disclosure
Study sponsored by AbbVie Corporation, Bristol Myers Squibb, Pharmacyclics, and Roche in 2022. None of the authors benefited personally from the research.
Acknowledgements
For further details on the LC 2022 GPS, please scan the QR code or visit:
https://lymphomacoalition.org/global-patient-survey
Copies of this poster are for personal use only and may not be reproduced without written permission of the authors. Please direct any queries to the research department at Lymphoma Coalition: steve@lymphomacoalition.org
Summary
The Lymphoma Coalition (LC) conducted the 2022 Global Patient Survey with 7,113 patients from 84 countries to assess health literacy and comprehension of diagnostic test explanations among lymphoma patients.
Key Findings
- 36% of patients reported poor comprehension of their diagnostic results.
- Age: Older patients had better comprehension (OR = 6.9).
- Sex: Males showed higher comprehension than females (OR = 1.5).
- Regional disparities:
- North America (72%) and Europe (68%) had the highest comprehension rates.
- Asia-Pacific had the lowest (53%).
- Gender differences: Women more frequently reported not understanding or not being given explanations.
- Average age by comprehension: Those who understood explanations were older (59 years) compared to those who did not (51–55 years).
Conclusion
Health literacy gaps significantly impact patient participation in decision-making. Disparities by age, sex, and region highlight risks to healthcare equity. Improving communication and ensuring patients understand their disease and treatment options could enhance shared decision-making and patient outcomes.