A Comparative Analysis of Patient Experience and Patient–Doctor Communication in Patients with Lymphoma and CLL: Clinical Trials versus Non-Clinical Trials
Authors: O. Bamigbola¹ and L. Warwick²
¹ Lymphoma Coalition, Research, Mississauga, ON, Canada
² Lymphoma Coalition, Management, Mississauga, ON, Canada
Introduction and Objectives
Clinical trials are essential in ensuring that new treatments are safe and effective and are also a way to improve standards of care. Patients enrolled in clinical trials receive optimal clinical care due to the close management included in trial design.
Using the 2020 Lymphoma Coalition (LC) Global Patient Survey (GPS) on lymphomas and CLL, this study aims to provide insight into the experience of patients with lymphoma and CLL who have participated in a clinical trial compared to those who have not.
This study focuses on:
- Their experience and disease management
- Their involvement in healthcare decision-making
- Communication with their doctors
Methods
Study Design
- This study is a sub-analysis of the LC 2020 GPS, an online global survey of patients with lymphoma and CLL, carried out every two years.
- The LC 2020 GPS was hosted on a third-party portal from January–March 2020 in 19 languages.
Respondents
- Globally, 11,878 respondents from 90+ countries (9,179 patients and 2,699 caregivers).
- This analysis compared a subgroup of patients with lymphoma or CLL who had been in a clinical trial (n=939) (“CT patients”) against a subgroup of patients who had never been in a clinical trial but who received or were currently receiving any form of treatment for their lymphoma/CLL (n=5079) (“non-CT patients”).
Statistical Analysis
- Raw data was entered, merged, and cleaned in IBM SPSS v.27.
- Demographics of both patient groups were examined.
- Questions relating to patients’ disease management experiences, decision-making, and patient–doctor communication were analyzed.
- Differences in proportions were tested using chi-square test (p=0.05) and odds ratios with 95% CI.
Results
CT patients were significantly different from non-CT patients in age-grouping, sex, and subtype distribution. CT patients had a higher proportion of older respondents (60–69 and 70+ years combined) compared to non-CT patients (48% vs 40%, respectively). Overall, half of CT patients (51%) were males compared to the non-CT group (42%).
Patients were asked to indicate how much they agree or disagree with statements relating to their experience and disease management. CT patients were 54% more likely to agree than disagree that they knew what their prescribed medicines do, compared to non-CT patients (OR=1.54 [1.1–2.0]; p=0.002). They were also 47% more likely than non-CT patients to agree than disagree that they were confident in their ability to get information from their doctor (OR=1.47 [1.1–2.0]; p=0.01) (Table 1).
Table 1. Disease Management and Healthcare Decision-Making of CT vs Non-CT Patients
| Disease Management and Experience | CT (%) | Non-CT (%) | OR (95% CI) | p-value |
|---|---|---|---|---|
| “I know what each of my prescribed medicines do.” (Strongly agree/agree) | 72 | 58 | 1.54 (1.1–2.0) | 0.002 |
| “I am confident in being able to get information I need from my doctor.” (Strongly agree/agree) | 83 | 72 | 1.47 (1.1–2.0) | 0.01 |
| “I always understand my doctor’s advice and treatment plans.” (Strongly agree/agree) | 86 | 82 | 1.20 (0.9–1.6) | 0.20 |
| “I am strongly confident in finding reliable info about my lymphoma/CLL.” (Strongly agree/agree) | 36 | 29 | 1.36 (0.95–1.9) | 0.09 |
| Healthcare Decision-Making | CT (%) | Non-CT (%) | p-value |
|---|---|---|---|
| “Are you as involved as much as you want to be in decisions about your care and treatment?” (Yes) | 58 | 51 | <0.001 |
| “Have you talked to your doctor about wanting to change your treatment to better meet your needs within the last 2 years?” (Yes) | 34 | 24 | <0.001 |
Results Continued
Although not statistically significant, CT patients were also more prevalent in reporting that they understood their doctor’s advice and treatment plans, and that they are confident in finding reliable information about their lymphoma/CLL, compared to non-CT patients.
CT patients were also more prevalent (34%) in reporting that they have talked to their doctors about wanting to change their treatment to better meet their needs within the last 2 years compared to non-CT patients (24%) (p<0.001).
When asked about patient–doctor communication, CT patients were:
- 40% more likely to report having good conversations with their doctor about care and treatment plans (OR=1.40 [1.03–1.9]; p=0.03)
- 70% more likely to be confident in communicating their concerns to the doctor (OR=1.70 [1.2–2.4]; p=0.002)
- Twice as likely to discuss treatment side effects with their doctors compared to non-CT patients (OR=2.20 [1.4–3.6]; p<0.001) (Table 2).
Table 2. Patient–Doctor Communication (CT vs Non-CT Patients)
| Patient–Doctor Communication | CT (%) | Non-CT (%) | OR (95% CI) | p-value |
|---|---|---|---|---|
| “I have good conversations with my doctor about my care and treatment plans.” (Strongly agree/agree) | 83 | 72 | 1.40 (1.03–1.9) | 0.03 |
| “I feel confident in communicating concerns with my doctor.” (Strongly agree/agree) | 88 | 74 | 1.70 (1.2–2.4) | 0.002 |
| “Have you talked to your doctor about side effects you experienced with treatment?” (Yes, multiple times / Yes, to some extent) | 97 | 93 | 2.20 (1.4–3.6) | <0.001 |
Conclusion
Results show that patients with lymphoma or CLL who have been in a clinical trial generally reported being more involved in their healthcare decision-making, more confident, and having better conversations with their doctors compared to those who have never been in a clinical trial.
LC advocates for all patients to be informed of clinical trials they may qualify for and encourages the same level of communication between patients and doctors that occurs in clinical trial patient–doctor interactions.
Contact Information
Please direct any queries to the research department at Lymphoma Coalition:
📧 funmi@lymphomacoalition.org
For further details on the LC 2020 GPS, visit:
🌐 https://lymphomacoalition.org/global-patient-survey
Summary
This study compared people with lymphoma or chronic lymphocytic leukemia (CLL) who had been in a clinical trial to those who had not, using results from the 2020 Lymphoma Coalition Global Patient Survey.
Key Findings
- Better knowledge and confidence: Clinical trial (CT) patients were more likely to know what their medicines do and feel confident getting information from their doctor.
- More involvement in decisions: CT patients were more likely to feel involved in decisions about their care and to have discussed treatment changes with their doctors.
- Improved communication: CT patients reported better conversations with their doctors, were more confident sharing concerns, and were twice as likely to discuss side effects compared to non-clinical trial (non-CT) patients.
Conclusion
Patients in clinical trials reported a better overall experience with disease management, decision-making, and communication with their doctors. The study suggests that all patients should be informed of clinical trials they may qualify for, and that the high level of communication seen in trials should be encouraged in routine care as well.