UNCOVERING PATIENT AND CAREGIVER VOICES IN METASTATIC PROSTATE CANCER: A US SOCIAL MEDIA STUDY
Author(s)
Elisabeth I. Heath, MD1, Darryl Mitteldorf, LCSW2, Jeremy Patch, MPH3, Chaitali Nag, MSc4, Vainavika Reddy Gaddam, MBA4, Shiva Padhi, MBA4, Diego Ospina Gonzalez, MD5, Gaurav Vadnerkar, PhD5;
1Mayo Clinic, Rochester, MN, USA, 2Malecare Cancer Support, New York, NY, USA, 3ZERO Prostate Cancer, Alexandria, VA, USA, 4Novartis Healthcare Private Limited, Hyderabad, India, 5Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA
1Mayo Clinic, Rochester, MN, USA, 2Malecare Cancer Support, New York, NY, USA, 3ZERO Prostate Cancer, Alexandria, VA, USA, 4Novartis Healthcare Private Limited, Hyderabad, India, 5Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA
OBJECTIVES: Leverage social media (SM) insights to uncover emerging trends, gauge sentiment, and identify critical unmet needs among patients with metastatic prostate cancer (mPC) and their caregivers.
METHODS: US-specific SM and forum data were collected via licensed Sprinklr tool (01/2023-07/2025) using predefined keywords and analyzed using manual and automated methods to generate qualitative insights on demographics, unmet needs, therapy experiences, and quality of life (QoL) from patient and caregiver (P&C) perspectives.
RESULTS: 1925 relevant posts were identified (patients: 67%; caregivers: 33%), covering 3174 themes. Most posts were from forums (56%) and Reddit (40%). P&Cs mainly shared and occasionally sought information on disease monitoring/management and clinical trials. Treatment discussions focused on personal experiences; some addressed access/administration. QoL topics emphasized the impact of mPC. Treatment class mentions (n=1744) frequently discussed hormone therapy (50%) and chemotherapy (18%). Negative sentiments were largely driven by ineffectiveness and side effects, particularly for chemotherapy (58%). In QoL mentions, patients emphasized treatment burden and its impact on physical (60%) and emotional (22%) health, expressing anger and depression over poor treatment efficacy/safety, including impacts on mobility and employment. Caregivers focused on disease burden and emotional health (82%), highlighting the emotional toll of a loved one suffering and concerns for their family’s future. Moreover, caregivers primarily focused on QoL-related unmet needs, including impacts on work, relationships, and the burden of providing emotional and ongoing care. In contrast, patients emphasized treatment efficacy/safety, particularly side effects. Overall, P&C queries mainly concerned treatment (71%) or disease (28%), focusing on safety, test interpretation, drug availability, and management strategies.
CONCLUSIONS: SM insights reveal that patients and caregivers need better treatments, help managing side effects, easier medication access, and plain‑language education on new therapies and clinical trials - needs that collaboration between advocates, clinicians, and pharmaceutical companies can meet.
METHODS: US-specific SM and forum data were collected via licensed Sprinklr tool (01/2023-07/2025) using predefined keywords and analyzed using manual and automated methods to generate qualitative insights on demographics, unmet needs, therapy experiences, and quality of life (QoL) from patient and caregiver (P&C) perspectives.
RESULTS: 1925 relevant posts were identified (patients: 67%; caregivers: 33%), covering 3174 themes. Most posts were from forums (56%) and Reddit (40%). P&Cs mainly shared and occasionally sought information on disease monitoring/management and clinical trials. Treatment discussions focused on personal experiences; some addressed access/administration. QoL topics emphasized the impact of mPC. Treatment class mentions (n=1744) frequently discussed hormone therapy (50%) and chemotherapy (18%). Negative sentiments were largely driven by ineffectiveness and side effects, particularly for chemotherapy (58%). In QoL mentions, patients emphasized treatment burden and its impact on physical (60%) and emotional (22%) health, expressing anger and depression over poor treatment efficacy/safety, including impacts on mobility and employment. Caregivers focused on disease burden and emotional health (82%), highlighting the emotional toll of a loved one suffering and concerns for their family’s future. Moreover, caregivers primarily focused on QoL-related unmet needs, including impacts on work, relationships, and the burden of providing emotional and ongoing care. In contrast, patients emphasized treatment efficacy/safety, particularly side effects. Overall, P&C queries mainly concerned treatment (71%) or disease (28%), focusing on safety, test interpretation, drug availability, and management strategies.
CONCLUSIONS: SM insights reveal that patients and caregivers need better treatments, help managing side effects, easier medication access, and plain‑language education on new therapies and clinical trials - needs that collaboration between advocates, clinicians, and pharmaceutical companies can meet.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR181
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, SDC: Oncology