DEFINING TREATMENT TOLERABILITY FROM THE PATIENT’S PERSPECTIVE: A MIXED-METHODS ANALYSIS OF THE CANCER EXPERIENCE REGISTRY
Author(s)
france ginchereau sowell, MA, PhD;
IQVIA, Scientific Advisor, New York, NY, USA
IQVIA, Scientific Advisor, New York, NY, USA
OBJECTIVES: Despite increasing recognition of treatment tolerability’s importance for patient experience, regulatory decisions, and clinical management, there is no universally accepted framework for defining it from patient’s perspective. This study aimed to define tolerability from the perspective of people diagnosed with cancer.
METHODS: A survey was conducted through the Cancer Experience Registry, the Cancer Support Community’s online survey platform, to understand how people with cancer define tolerability and factors they consider. A mixed-method approach (thematic analysis and descriptive statistics) was used to analyze responses including free-text.
RESULTS: Participants who completed the survey in December 2023-February 2024 (N=493), residing in North America, were predominantly White women aged ≥65 years with diverse cancer diagnoses (median time since diagnosis=8.0 years; range 2-51 years). Most had not received treatment in the past six months (61.3%). When defining tolerability, participants primarily mentioned treatment side effects (SE, 40.4%), quality of life impacts (32.7%), and ability to manage treatment effects (19.5%). The top three factors considered when assessing tolerability were SE (76.6%), treatment burden (59.3%), and treatment outcomes (54.7%), including treatment effectiveness (29.9%) or becoming cancer-free (11.8%). Subgroup analyses will be further presented by age, treatment status, and time since diagnosis.
CONCLUSIONS: This patient survey demonstrated tolerability is a multi-dimensional construct, not exclusively related to SE, which influences treatment adherence. These findings have implications for tolerability evaluation in clinical drug development, real-world and shared treatment decision-making. Further insights from subgroups may also elucidate how individuals define tolerability.
METHODS: A survey was conducted through the Cancer Experience Registry, the Cancer Support Community’s online survey platform, to understand how people with cancer define tolerability and factors they consider. A mixed-method approach (thematic analysis and descriptive statistics) was used to analyze responses including free-text.
RESULTS: Participants who completed the survey in December 2023-February 2024 (N=493), residing in North America, were predominantly White women aged ≥65 years with diverse cancer diagnoses (median time since diagnosis=8.0 years; range 2-51 years). Most had not received treatment in the past six months (61.3%). When defining tolerability, participants primarily mentioned treatment side effects (SE, 40.4%), quality of life impacts (32.7%), and ability to manage treatment effects (19.5%). The top three factors considered when assessing tolerability were SE (76.6%), treatment burden (59.3%), and treatment outcomes (54.7%), including treatment effectiveness (29.9%) or becoming cancer-free (11.8%). Subgroup analyses will be further presented by age, treatment status, and time since diagnosis.
CONCLUSIONS: This patient survey demonstrated tolerability is a multi-dimensional construct, not exclusively related to SE, which influences treatment adherence. These findings have implications for tolerability evaluation in clinical drug development, real-world and shared treatment decision-making. Further insights from subgroups may also elucidate how individuals define tolerability.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR136
Topic
Patient-Centered Research
Disease
SDC: Oncology