Patient Perspectives on Disease Experiences and Value of Real-Time Self-Reported Symptom and Treatment Monitoring in Locally Advanced and Metastatic Breast Cancer
Author(s)
Jillian Lusk, MPH1, Connie Zhang, MPH2, Amanda Healey, MPH2, Ainsley Belisle, MS2, Samantha McStocker, BS2, Jordan Owashi, BA2, Maria Jakobsson, PhD3.
1Pfizer, Pittsubrgh, PA, USA, 2Folia Health, Boston, MA, USA, 3Pfizer, Stockholm, Sweden.
1Pfizer, Pittsubrgh, PA, USA, 2Folia Health, Boston, MA, USA, 3Pfizer, Stockholm, Sweden.
OBJECTIVES: Locally advanced and metastatic breast cancer (a/mBC) is highly burdensome and significantly impacts patients’ lives (1). With the rapidly evolving a/mBC treatment landscape, exploring patient-relevant outcomes has become essential. Additionally, patient perspectives are expected to play a prominent role in the new EU Joint Clinical Assessment process. This qualitative study investigated symptoms, impacts, and health-related quality of life (HRQoL) and explored the value of long-term follow-up data collection in this patient population.
METHODS: Semi-structured interviews were conducted with 10 US patients (ages 43-69) receiving treatment for a/mBC (80% [n=8] mBC patients). Interviews were recorded and transcribed, and thematic analysis performed to identify key themes.
RESULTS: Patients reported significant symptom burden, impacting HRQoL and motivation to continue treatment. They expressed considerable mental health burden from fearing progression, exhausting treatment options, and managing potential new symptoms and side effects when switching treatments. Patients desire to align treatment goals with their care team, driving collaborative decision-making about their treatment journey. Effective communication with their provider about ongoing treatments and how these intersect with personal priorities is important to patients; however cognitive impairment and/or recency bias on symptom recall pose challenges to accurate discussions with their provider. Patients value and are motivated to utilize real-time tracking, to ease anxieties from forgetfulness by logging symptoms and treatment adherence and to distinguish normal symptom patterns from concerning changes, offering reassurance and clearer communication with clinicians.
CONCLUSIONS: Although limited by a small sample size, findings highlight the advantages of collecting real-time, patient-generated insights longitudinally from patients with a/mBC, to ensure patient-centered care and provide a valuable tool for patients in their treatment journey. Further research will explore collection of patient-reported measures of HRQoL in a larger scale, real-world setting, with the goals of amplifying patient voices and priorities in drug development, regulatory decisions, HTA evaluations, and clinical decision-making.
METHODS: Semi-structured interviews were conducted with 10 US patients (ages 43-69) receiving treatment for a/mBC (80% [n=8] mBC patients). Interviews were recorded and transcribed, and thematic analysis performed to identify key themes.
RESULTS: Patients reported significant symptom burden, impacting HRQoL and motivation to continue treatment. They expressed considerable mental health burden from fearing progression, exhausting treatment options, and managing potential new symptoms and side effects when switching treatments. Patients desire to align treatment goals with their care team, driving collaborative decision-making about their treatment journey. Effective communication with their provider about ongoing treatments and how these intersect with personal priorities is important to patients; however cognitive impairment and/or recency bias on symptom recall pose challenges to accurate discussions with their provider. Patients value and are motivated to utilize real-time tracking, to ease anxieties from forgetfulness by logging symptoms and treatment adherence and to distinguish normal symptom patterns from concerning changes, offering reassurance and clearer communication with clinicians.
CONCLUSIONS: Although limited by a small sample size, findings highlight the advantages of collecting real-time, patient-generated insights longitudinally from patients with a/mBC, to ensure patient-centered care and provide a valuable tool for patients in their treatment journey. Further research will explore collection of patient-reported measures of HRQoL in a larger scale, real-world setting, with the goals of amplifying patient voices and priorities in drug development, regulatory decisions, HTA evaluations, and clinical decision-making.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR173
Topic
Health Service Delivery & Process of Care, Health Technology Assessment, Patient-Centered Research
Topic Subcategory
Patient Behavior and Incentives, Patient-reported Outcomes & Quality of Life Outcomes
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, Oncology