The Effect of Unaddressed Side Effects on Patient-Reported Confidence in Care Plans Among Patients with Lymphoma or Chronic Lymphocytic Leukemia (CLL)
Authors: S. Kaloger, N. Bolaños, S. Sajkowski, A. Watson, L. Warwick
Lymphoma Coalition (Las Vegas, Madrid, Mississauga)
Introduction
Patients with lymphoma or CLL frequently experience side effects that affect their wellbeing. Managing these side effects is a crucial part of care. When left unaddressed, they can cause additional distress—both physical and emotional. It is still unclear how this may affect a patient’s confidence in their treatment plan.
Aim
This study examined whether patients with lymphoma or CLL who did not receive support for side effects were more likely to report low confidence in their treatment plan.
Objective: Identify specific side effects most strongly linked to reduced confidence, providing insight into how better symptom management could improve patient experience.
Method
- Data: Lymphoma Coalition’s 2024 Global Patient Survey (individuals diagnosed with lymphoma or CLL, had received or were receiving treatment).
- Participants asked about experiences with side effects and whether support was provided by a healthcare professional.
- Survey: global, online, anonymous, multilingual.
- Individuals diagnosed with lymphoma/CLL, currently or previously treated.
- 35 side effects included.
- Analysis: Contingency analysis with odds ratios (OR) + 95% CI used to measure likelihood of reporting reduced confidence when support was absent.
Results
- Sample size: 6,684 individuals from 69 countries.
- Median age: 62 years (range 18–94); 61% female.
- Across all 35 side effects, support from a healthcare provider was consistently linked to higher confidence in care plans.
- 30 symptoms showed statistically significant associations.
- Strongest associations for low confidence when unaddressed:
- Graft-versus-host disease (GVHD) OR = 19.6
- Blood clots OR = 5.9
- Kidney problems OR = 3.4
- Anaemia OR = 3.2
- Constipation OR = 2.9
- Liver problems OR = 2.6
- Pain OR = 2.5
- Fatigue OR = 2.5
- Diarrhoea OR = 2.5
- Osteoporosis OR = 2.4
- Clear trend: Patients whose side effects were not addressed were significantly more likely to report reduced confidence in treatment plans.
Figures:
- Figure 1: Odds ratios for low confidence across 35 side effects (top 5 in purple).
- Figure 2: Patients reporting low confidence by side effect (e.g., fatigue, pain, anaemia, constipation, diarrhoea). Support absence = much higher low confidence.
- Figure 3: Overall: 24% reported low confidence if side effects not supported vs 8% if supported.
Conclusions
- Strong association between unsupported side effects and reduced confidence in care plans.
- Side effect management plays a critical role not only in outcomes but also in patient trust and engagement.
- Consistent symptom support through open dialogue, monitoring, acknowledgment, and referrals contributes to better patient experience.
- Improving support = actionable pathway to increase confidence and reinforce patient-centered care.
References
Lymphoma Coalition. Global Patient Survey on Lymphomas and CLL 2024 – Internal Data. Mississauga: Lymphoma Coalition, 2024.
Acknowledgement
Sponsored by AstraZeneca, Eli Lilly, Incyte, Kite, Gilead, Johnson & Johnson, Novartis, Regeneron, F. Hoffmann-La Roche, Sobi, Takeda. None of the authors benefited personally.
Contact Information
Shawn@lymphomacoalition.org
More info: lymphomacoalition.org/global-patient-survey
Summary
This poster presents findings from the 2024 Global Patient Survey (6,684 participants, 69 countries) on lymphoma and CLL.
- Key finding: Patients whose side effects were not supported by healthcare providers were far more likely to report low confidence in their treatment plans.
- 30 out of 35 symptoms showed significant associations. The strongest were GVHD, blood clots, kidney problems, anaemia, constipation, liver problems, pain, fatigue, diarrhoea, and osteoporosis.
- Impact: Confidence in care tripled (24% vs 8%) when side effects were not supported.
- Conclusion: Proactive side effect management (acknowledgment, monitoring, communication, and referrals) improves both trust and patient experience, offering a path to more patient-centered