A Patient-Led Survey of Antibody Drug Conjugate Usage and Dosing for People Living With Metastatic Breast Cancer

Amy Beumer; Martha Carlson; Abby L. Arcuri; Julia Maues; Janice Cowden; Stephanie Walker; Kelly Shanahan; Jo Lynn Collins; A J Veach; Hope S. Rugo; Mark E. Burkard; Kevin M. Kalinsky; Aditya Bardia; Maryam B. Lustberg; Elizabeth Lerner Papautsky; Mya L. Roberson

doi:10.1177/23743735261457837

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A Patient-Led Survey of Antibody Drug Conjugate Usage and Dosing for People Living With Metastatic Breast Cancer

Journal article

Open access

Peer reviewed

A Patient-Led Survey of Antibody Drug Conjugate Usage and Dosing for People Living With Metastatic Breast Cancer

Amy Beumer, Martha Carlson, Abby L. Arcuri, Julia Maues, Janice Cowden, Stephanie Walker, Kelly Shanahan, Jo Lynn Collins, A J Veach, Hope S. Rugo, …

Journal of patient experience, Vol.13, pp.1-7

2026

DOI: 10.1177/23743735261457837

PMCID: PMC13222401

PMID: 42227000

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Abstract

Scientific advancements have led to more people living longer with metastatic breast cancer (MBC). Antibody-drug conjugates (ADCs) offer a promising treatment option, but currently approved ADCs are associated with significant side effects that can impact quality of life. Dose reductions may help mitigate these effects, yet little is known about real-world, patient-reported experiences with ADC dosing. We surveyed 170 individuals with MBC who had received ADC treatment to assess initial dosing, dose modifications, and barriers to supportive care. Most respondents (94.1%) began treatment with the recommended dosing frequency and 82.9% with the recommended dose. However, 35.3% reported dose reductions, primarily due to experienced or anticipated side effects. Open-ended responses underscored the burden of side effects: “If not for low dose, I don’t think I could go on.” Most participants (81.0%) reported oncologist-led efforts to manage side effects, and 73.0% used medications for symptom control. Financial barriers were common, with 43.5% reporting difficulty accessing supportive care. These findings highlight the need for patient-centered dosing strategies and improved access to supportive care.

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Details

Title: Subtitle: A Patient-Led Survey of Antibody Drug Conjugate Usage and Dosing for People Living With Metastatic Breast Cancer
Creators: Amy Beumer - Patient-Centered Outcomes Research Institute
Martha Carlson - Patient-Centered Outcomes Research Institute
Abby L. Arcuri - University of North Carolina at Chapel Hill
Julia Maues - Patient-Centered Outcomes Research Institute
Janice Cowden - Patient-Centered Outcomes Research Institute
Stephanie Walker - Patient-Centered Outcomes Research Institute
Kelly Shanahan - Patient-Centered Outcomes Research Institute
Jo Lynn Collins - Patient-Centered Outcomes Research Institute
A J Veach - Patient-Centered Outcomes Research Institute
Hope S. Rugo - City Of Hope National Medical Center
Mark E. Burkard - University of Iowa
Kevin M. Kalinsky - Sylvester Comprehensive Cancer Center
Aditya Bardia - UCLA Jonsson Comprehensive Cancer Center
Maryam B. Lustberg - Yale Cancer Center
Elizabeth Lerner Papautsky - Chicago Department of Public Health
Mya L. Roberson - University of North Carolina at Chapel Hill
Resource Type: Journal article
Publication Details: Journal of patient experience, Vol.13, pp.1-7
DOI: 10.1177/23743735261457837
PMID: 42227000
PMCID: PMC13222401
NLM abbreviation: J Patient Exp
ISSN: 2374-3735
eISSN: 2374-3743
Publisher: SAGE Publications
Grant note: North Carolina University Cancer Research Fund Philanthropic support from Steve Loeser in Memory of Anne Loeser
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by generous support from Steve Loeser, in memory of Anne Loeser, and the North Carolina University Cancer Research Fund.
Language: English
Date published: 2026
Academic Unit: Internal Medicine
Record Identifier: 9985167574002771

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