Abstract 7388: Trends of diagnosis disclosure among individuals with plasma cell disorders

Abstract Multiple myeloma, along with precancerous conditions such as monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma, represent the most common plasma cell disorders (PCDs) around the world. Coping with such disorders is often a challenging prospect for patients, and the disclosure or withholding of information pertaining to the patient’s diagnosis or prognosis may have a significant impact on the patient’s perception of their care. We hypothesize that patient perceptions of diagnosis disclosure will be largely positive due to the various psychosocial benefits conferred by the sharing of information with friends and family. In order to investigate these diagnosis disclosure patterns among individuals with PCDs and determine areas for interventions that utilize social support strategies to help patients navigate their diagnosis, we invited participants with PCDs through the HealthTree Cure Hub to complete a 34-question online survey regarding their disclosure trends (n= 510). Participants generally reported sharing their diagnosis with at least one person (98%), with the most common responses being a spouse, domestic partner or significant other (60%) and friend(s) (10%). Most participants that chose to disclose their diagnosis experienced a positive impact in their coping (79%) and became closer with others (55%), whereas patients who chose not to disclose their diagnosis generally reported feeling more isolated in their relationships (56%). Despite some reports of certain negative experiences associated with sharing a PCD diagnosis, the majority of participants expressed no regrets over sharing their diagnosis (87%). Based on these findings, patients generally perceive sharing their diagnosis among their primary social networks to be beneficial to their coping. Oncologists may also be advised to promote the utilization of social support to navigate a PCD diagnosis. Citation Format: Akshay Dalvi, Maria Malik, Andriy Derkach, Ana Sahagun, Jorge A. Martinez, Gia Merlo, Jennifer Ahlstrom, Jay R. Hydren, Saad Z. Usmani, Susan Chimonas, Robin Ortiz, Urvi Shah. Trends of diagnosis disclosure among individuals with plasma cell disorders [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2025; Part 1 (Regular Abstracts); 2025 Apr 25-30; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2025;85(8_Suppl_1):Abstract nr 7388.

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Journal
Cancer Research
Published
2025-04-21
DOI
https://doi.org/10.1158/1538-7445.am2025-7388
Primary Topic
Systemic Sclerosis and Related Diseases
Type
article
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article

Abstract 7388: Trends of diagnosis disclosure among individuals with plasma cell disorders

Susan C. Chimonas, Gia Merlo, Jay R. Hydren, Robin Ortiz et al.
Cancer Research
Systemic Sclerosis and Related Diseases
article

Abstract 7388: Trends of diagnosis disclosure among individuals with plasma cell disorders

Susan C. Chimonas, Gia Merlo, Jay R. Hydren, Robin Ortiz, Saad Z. Usmani, Jennifer M. Ahlstrom, Urvi Ashok Shah, Ana Sahagun, Andriy Derkach, Maria Malik, Jorge Martínez, Akshay Dalvi
article en

Abstract

Abstract Multiple myeloma, along with precancerous conditions such as monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma, represent the most common plasma cell disorders (PCDs) around the world. Coping with such disorders is often a challenging prospect for patients, and the disclosure or withholding of information pertaining to the patient’s diagnosis or prognosis may have a significant impact on the patient’s perception of their care. We hypothesize that patient perceptions of diagnosis disclosure will be largely positive due to the various psychosocial benefits conferred by the sharing of information with friends and family. In order to investigate these diagnosis disclosure patterns among individuals with PCDs and determine areas for interventions that utilize social support strategies to help patients navigate their diagnosis, we invited participants with PCDs through the HealthTree Cure Hub to complete a 34-question online survey regarding their disclosure trends (n= 510). Participants generally reported sharing their diagnosis with at least one person (98%), with the most common responses being a spouse, domestic partner or significant other (60%) and friend(s) (10%). Most participants that chose to disclose their diagnosis experienced a positive impact in their coping (79%) and became closer with others (55%), whereas patients who chose not to disclose their diagnosis generally reported feeling more isolated in their relationships (56%). Despite some reports of certain negative experiences associated with sharing a PCD diagnosis, the majority of participants expressed no regrets over sharing their diagnosis (87%). Based on these findings, patients generally perceive sharing their diagnosis among their primary social networks to be beneficial to their coping. Oncologists may also be advised to promote the utilization of social support to navigate a PCD diagnosis. Citation Format: Akshay Dalvi, Maria Malik, Andriy Derkach, Ana Sahagun, Jorge A. Martinez, Gia Merlo, Jennifer Ahlstrom, Jay R. Hydren, Saad Z. Usmani, Susan Chimonas, Robin Ortiz, Urvi Shah. Trends of diagnosis disclosure among individuals with plasma cell disorders [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2025; Part 1 (Regular Abstracts); 2025 Apr 25-30; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2025;85(8_Suppl_1):Abstract nr 7388.

Cancer ResearchVol. 85(8_Supplement_1)
Memorial Sloan Kettering Cancer Center (US), University of Illinois Chicago (US), Kettering University (US), NYU Langone Health (US), EvergreenHealth Foundation (US), New York University (US)
Openalex Percentile: Top 88%
Systemic Sclerosis and Related Diseases
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