Variances in Patient-Reported Experiences with Shared Decision-Making by Biological Sex in Patients with DLBCL – An Analysis from the Lymphoma Coalition 2024 Global Patient Survey on Lymphomas and CLL
Authors: L. Warwick, S. Sajkowski, N. Bolaños
Lymphoma Coalition (Mississauga, Madrid)
Introduction
Shared decision-making (SDM) is a core component of patient-centred care for individuals with lymphomas and CLL. SDM requires that patients are meaningfully included in choices about their care and that healthcare providers understand and respond to patient needs and preferences. Previous studies have shown biological sex differences in patient-reported outcomes, but little research has examined whether perceptions of involvement in care also vary by sex. Filling this gap is essential to improving communication and equitable participation in treatment planning.
Aim
This study investigated whether patients with diffuse large B-cell lymphoma (DLBCL) report differences in shared decision-making experiences based on biological sex.
Objective: Explore sex-based variances across communication, perceived involvement in care, and decision-making preferences to better understand how SDM can be strengthened for all individuals with DLBCL.
Method
Data: Lymphoma Coalition’s 2024 Global Patient Survey on Lymphomas & CLL.
Sample: 1,106 people with lived experience (PWLE) of DLBCL across 44 countries.
- 63% female (n=697)
- Median age 58 (range 22–92)
Survey was global, online, anonymous, and multilingual.
Participants answered questions related to:
- Treatment preferences
- Perceived involvement in decision-making
- Communication with HCPs
- Encounters such as encouragement to ask questions, interruptions, and checks for understanding
Responses were categorised by biological sex (female, male) and analysed descriptively to identify differences across SDM experiences.
Results
Shared decision-making importance:
Nearly all respondents wanted involvement in care decisions:
- 99% of males
- 97% of females
Clinic behaviour findings (all respondents combined)
- 50% did not feel adequately involved in decisions
- 57% did not feel their HCP always encouraged questions
- 59% said their doctor did not routinely check understanding
- 45% reported their doctor interrupts them
Sex-based variances:
Male respondents more frequently reported:
- Feeling highly involved in their care
- Encouragement to ask questions
- Being offered more than one treatment option
- More positive communication experiences
Female respondents more often reported:
- Preferring to make healthcare decisions entirely on their own (25% vs 18%)
- Less positive communication experiences
Male respondents were more likely to prefer that their doctor make the final decision (27% vs 19%).
Figures
Figure 1: Overall clinic behaviours.
Figure 2: Sex-based variances in SDM experiences.
Figure 3: Decision-making preferences by biological sex.
Conclusions
Clear variances exist in shared decision-making experiences between male and female respondents with DLBCL. Male respondents more often reported greater involvement and supportive communication, while female respondents frequently preferred autonomous decision-making and reported less positive interactions. Despite strong desire for engagement across all respondents, only half felt adequately involved in treatment decisions. These findings highlight the need for improved SDM practices overall and recognition of sex-based communication differences to ensure all patients feel informed, supported, and meaningfully included in their care.
References
Lymphoma Coalition. Global Patient Survey on Lymphomas and CLL 2024 – Internal Data. Mississauga, Canada: Lymphoma Coalition; 2024.
Acknowledgement
Thank you to all individuals with lived experience of lymphoma and CLL who contributed to this research, and to LC Member organisations worldwide for their continued support.
Contact Information
shawn@lymphomacoalition.org
More info: https://lymphomacoalition.org/global-patient-survey/
Summary
This poster presents findings from 1,106 individuals with lived experience of DLBCL across 44 countries.
Key finding: Nearly all respondents—99% of males and 97% of females—want involvement in care decisions, yet only half feel adequately included. Male respondents more frequently reported positive communication and feeling highly involved, while female respondents more often preferred to make final decisions themselves and described less supportive communication experiences.
Impact: Significant gaps in shared decision-making affect all individuals with DLBCL, with many reporting insufficient encouragement to ask questions, limited checks for understanding, and interruptions during consultation.
Conclusion: Strengthening SDM requires consistent, proactive communication from healthcare providers and an awareness of sex-based differences in preferences and experiences to ensure all patients feel equally informed, supported, and engaged. These findings highlight the need for HCPs to proactively engage in SDM in general and to also recognize and address differences between biological sexes when communicating with patients to ensure they feel equally engaged, informed and supported in making treatment and healthcare decisions.