Elephant in the Room: Gap Between the Awareness and Need for Psycho-Social Support for Czech Lymphoma Patients as Captured Through the Analyzes of Social and Traditional Media
Author(s)
Jakub Novák, MSc, PhD1, Jakub Smutny, MSc.2, Veronika Bacova, MSc.1, Jan Popluhar, MSc.1, Martin Pour, MSc.1;
1ROCHE s.r.o., Prague, Czech Republic, 2Newton Media, a. s., Prague, Czech Republic
1ROCHE s.r.o., Prague, Czech Republic, 2Newton Media, a. s., Prague, Czech Republic
Presentation Documents
OBJECTIVES: With their omnipresence in all aspects of daily lives, social media, and online forums have also become extensively used by patients and caregivers to ask questions and discuss their health, disease, or treatment-related experiences and concerns. Together with traditional media they thus shape disease awareness and might significantly influence the patient journey as well as the patient´s quality of life. With this study combining social media listening and traditional media analysis we aimed to gain insights into the lymphoma patients’ and caregivers’ sentiments, the unmet needs, blind spots, and system bottlenecks in Czechia.
METHODS: Both quantitative and qualitative analyses of social media and qualitative analysis of traditional media were conducted and combined to identify and analyze all relevant posts and media outputs from the period between October 2022 and September 2024 on hematological malignancies. From these, unmet needs, system bottlenecks, and blind spots or main sources of information were identified that shape patient journey.
RESULTS: Based on the selected keywords, 9.860 posts on social media and discussion platforms for the defined period; more specifically, 860 posts directly mentioned the word “lymphoma”, while ,,hemato-oncology“ (and derived words) were found in approximately seven hundred posts. Traditional media covered “lymphoma” in 531 outputs. Among other topics, patients often reflected the side effects of (chemo)therapy and distress as the main influences on their quality of life. Despite that, patient awareness about psychological and social support options and their importance is limited and the information about it is scarce.
CONCLUSIONS: Public health policies should respond to meet such demand with a potentially significant impact on improving quality of life as well as the impact of pharmacological interventions. To tailor these policies to fit real-life needs and to better understand them, social media listening might help to guide such a process.
METHODS: Both quantitative and qualitative analyses of social media and qualitative analysis of traditional media were conducted and combined to identify and analyze all relevant posts and media outputs from the period between October 2022 and September 2024 on hematological malignancies. From these, unmet needs, system bottlenecks, and blind spots or main sources of information were identified that shape patient journey.
RESULTS: Based on the selected keywords, 9.860 posts on social media and discussion platforms for the defined period; more specifically, 860 posts directly mentioned the word “lymphoma”, while ,,hemato-oncology“ (and derived words) were found in approximately seven hundred posts. Traditional media covered “lymphoma” in 531 outputs. Among other topics, patients often reflected the side effects of (chemo)therapy and distress as the main influences on their quality of life. Despite that, patient awareness about psychological and social support options and their importance is limited and the information about it is scarce.
CONCLUSIONS: Public health policies should respond to meet such demand with a potentially significant impact on improving quality of life as well as the impact of pharmacological interventions. To tailor these policies to fit real-life needs and to better understand them, social media listening might help to guide such a process.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PCR121
Topic
Patient-Centered Research
Topic Subcategory
Patient Behavior and Incentives, Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Oncology, SDC: Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)