An Examination of Health Literacy Amongst Patients with Chronic Lymphocytic Leukemia
A Study from The Lymphoma Coalition Global Patient Survey 2022
Authors: Steve E. Kalloger¹, Shawna Warwick²
¹Department of Research & Information, Lymphoma Coalition
²Lymphoma Coalition, Mississauga, ON, Canada
Introduction
Lymphoma Coalition (LC) supports over 90 member organizations across 55 countries. LC’s overarching vision is equity in lymphoma outcomes across borders. Health literacy is a key aspect of efficient and meaningful communication between patients and physicians.
Chronic lymphocytic leukemia (CLL) can have a disease course that spans ten years or longer. The length of this course allows patients to have the opportunity to engage in shared decision-making with their primary lymphoma care provider.
This study sought to quantify health literacy using nine key terms relevant to those with CLL and to examine if core survey demographics were predictors of poor health literacy.
Methods
The Lymphoma Coalition Global Patient Survey was deployed in 2022. Patients with CLL were asked if they understood the following terms:
- Stable Disease
- Indolent Disease
- Progressive Disease
- Tumor Load
- Clonal Evolution
- Treatment Duration
- Treatment Holiday
- Minimal Residual Disease (MRD)
- No Evidence of Disease (NED)
Responses were categorized into:
- Completely understood
- Partially understood
- Did not understand
Frequency distributions were used to enumerate responses. Associations with core demographics were performed with contingency analysis and quantified with the Likelihood Chi Square or Fisher’s Exact Test as appropriate.
Results
Overall Comprehension (Figure 1)
Rate of comprehension for the nine terms:
- Treatment Duration (n=672): 95.4% understood, 4.6% not understood
- Stable Disease (n=687): 89.5% understood, 10.5% not understood
- Progressive Disease (n=673): 85.6% understood, 14.4% not understood
- Treatment Holiday (n=668): 80.2% understood, 19.8% not understood
- No Evidence of Disease (n=666): 64.2% understood, 35.8% not understood
- Indolent Disease (n=679): 60.2% understood, 39.8% not understood
- Tumor Load (n=672): 59.5% understood, 40.5% not understood
- Minimal Residual Disease (MRD) (n=670): 59.1% understood, 40.9% not understood
- Clonal Evolution (n=668): 30.7% understood, 69.3% not understood
Survey Participation:
- Average response rate: 676 (range: 668–687)
- Mean age: 64 years (range: 26–97)
- Gender: 47% female
- Relapse experience: 63% had not relapsed, 23% relapsed once, 14% relapsed more than once
Regional Comparisons
Figures 2–10 illustrate comprehension across regions (Europe, Asia-Pacific, Middle East & Africa, North America, South America). Key findings:
- Stable and Progressive Disease: high comprehension across all regions
- Treatment Duration: consistently understood (>90%) across regions
- Clonal Evolution: lowest comprehension across all regions, with most patients not understanding the term
- Terms such as MRD, Indolent Disease, and NED showed significant variability by region
Results (Continued)
- Females had significantly better comprehension than males for terms such as Progressive Disease (OR = 1.7 [95% CI: 1.1–2.7]), Clonal Evolution (OR = 1.5 [95% CI: 1.1–2.1]), and MRD (OR = 1.5 [95% CI: 1.03–1.9]).
- Higher education was associated with increased comprehension of Treatment Duration, MRD, and Indolent Disease (p < 0.008).
- Employment, household status, age, and area of residence revealed only mild associations.
Regional Averages (9 terms comprehension):
- North America: 72.8%
- Europe: 69.8%
- Asia-Pacific: 65.2%
Conclusion
The results suggest significant heterogeneity in the comprehension of CLL-related terms.
- Common terms such as Treatment Duration and Stable Disease are widely understood.
- Less familiar terms (e.g., MRD, Clonal Evolution) highlight gaps in patient awareness of long-term disease progression.
- Females and patients with higher education showed increased comprehension.
- Improved health literacy is essential for shared decision-making and patient empowerment.
Key Takeaway:
There is room for improvement in health literacy for patients with CLL, particularly regarding terms that may influence prognosis and treatment decisions. Health literacy should be seen as one of the necessary components patients need to facilitate greater participation in their care.
Contact Information
For further details on the LC 2022 GPS, visit:
🔗 https://lymphomacoalition.org/global-patient-survey/
Copies of this poster obtained through the Quick Response (QR) code are for personal use only and may not be reproduced without permission from iWCLL and the author.
For inquiries, contact:
📧 Steve Kalloger – steve@lymphomacoalition.org
Summary
The Lymphoma Coalition surveyed over 670 patients with chronic lymphocytic leukemia (CLL) in 2022 to assess health literacy around nine medical terms (e.g., Stable Disease, Minimal Residual Disease, Clonal Evolution).
Key Findings:
- Well-understood terms: Treatment Duration (95%), Stable Disease (90%), Progressive Disease (86%).
- Poorly understood terms: Minimal Residual Disease (59%), Tumor Load (60%), Clonal Evolution (31%).
- Demographics: Average age 64; 47% female; 63% had not relapsed.
- Regional differences: Comprehension highest in North America (73%), followed by Europe (70%) and Asia-Pacific (65%).
- Predictors of better understanding: Female gender and higher education levels were linked with increased comprehension.
Conclusion:
Health literacy among CLL patients varies widely. While common terms are generally well understood, more complex or technical terms remain confusing. Improving patient understanding of these key concepts is critical for shared decision-making and better participation in their own care.