A Cross-Sectional Study Examining Potential Demographic Barriers to Receiving Information on Clinical Trials in Relapsed/Refractory Patients Who Have Received Stem Cell Transplants (SCT)
Authors:
S. E. Kalloger¹, A. Watson², C. Bates², L. Warwick²
¹ Lymphoma Coalition, Research, Mississauga, ON, Canada
² Lymphoma Coalition, Management, Mississauga, ON, Canada
Introduction
Lymphoma Coalition (LC) supports almost 90 patient organizations across more than 50 countries. LC’s overarching goal is to facilitate a community of patient organizations supporting efforts to help patients with lymphoma receive optimal care and support.
Stem Cell Transplant (SCT) and clinical trials involving new treatments provide increased opportunities for longer-lasting remission in patients with lymphoma with relapsed or refractory disease. However, not all patients are given information or the opportunity to access clinical trials.
This study investigates the potential socioeconomic barriers to receiving information on clinical trials or the opportunity to participate in them for patients with lymphoma who have previously received SCT.
Methods
Study Design
This study reports on a sub-analysis of the LC 2022 Global Patient Survey (GPS), which is an online global survey distributed to patients with lymphoma and CLL. The electronic survey link was distributed to all participating member organizations worldwide, who then shared it with patients and caregivers who engage with them. Individuals who chose to complete the survey did so via a third-party portal.
This sub-study included patients with ≥1 relapse or refractory disease who had previously received SCT.
Respondents
Globally, 8,637 respondents (7,113 patients and 1,524 caregivers) from 84 countries completed the 2022 LC Global Patient Survey (GPS). After exclusion criteria were applied, 137 respondents remained for this analysis.
Statistical Analysis
- Data were cleaned and organized, removing partially completed responses.
- Frequency tables and charts were used to represent the data and identify differences between various groups.
- Appropriate statistical tests were performed to determine the significance of observed differences.
- Cross-tabulations were conducted across age, gender, ethnicity, education, residential area, and relationship status.
- Differences found in cross-tabulations were assessed using likelihood ratio Chi-Square or Fisher’s Exact test, as appropriate.
- Analyses were completed using JMP Pro v17 (SAS Institute, Cary, NC, USA).
Results
It is important to note that while none of these results are statistically significant, we cannot conclude that there was no discrimination or bias related to the provision of information on clinical trials. This decision is at the physician’s discretion.
Due to the small cohort size, this data cannot be generalized to the full population.
- Across regions with the most significant response rates (APAC, Europe, and North America), approximately 65%–71% of respondents reported being provided information on a clinical trial.
- Patients who had a partner were more likely to be provided with information on clinical trials (71%) compared to those who classified themselves as single (53%) (p=0.08).
Conclusion
LC advocates equitable access to care for all patients with lymphoma, regardless of where they reside.
Key findings:
- 30% of respondents with relapsed/refractory disease who had received SCT had never been provided information or presented an opportunity to participate in a clinical trial by their doctor.
- The data do not reflect a significant cause in two survey categories (age and gender).
- Patients with partners had increased access to clinical trial information, indicating that social support may influence opportunities.
Differences amongst racial/ethnic groups, education levels, and residential areas were too limited to draw meaningful conclusions but may suggest discrimination exists.
LC strongly supports equitable care for all patients, starting with ensuring that all are provided access to clinical trials as part of shared decision-making.
Disclosure
The study was sponsored by Roche. The authors received no financial benefit from the research.
For further details on the LC 2022 GPS data, contact:
Department of Research & Information, Lymphoma Coalition
Email: sekalloger@lymphomacoalition.org
Website: www.ebmt.org
Summary
The Lymphoma Coalition conducted a sub-analysis of its 2022 Global Patient Survey to explore potential demographic barriers to receiving information about clinical trials among patients with relapsed/refractory lymphoma who had previously undergone stem cell transplant (SCT).
- Sample: 137 respondents met inclusion criteria from an original 8,637 global survey participants.
- Findings:
- Around 65–71% of patients reported being informed about clinical trials.
- Patients with partners were more likely to be provided with clinical trial information (71%) compared to single patients (53%).
- No significant differences were observed across age, gender, education, ethnicity, or residential area, though small sample size limits generalization.
- 30% of patients never received clinical trial information from their doctor.
- Conclusion: Access to clinical trial information is inconsistent. Social support (e.g., having a partner) may influence access. The study emphasizes the need for equitable, proactive communication so all patients can make informed decisions.