Enhancing Understanding of Quality of Life in Multiple Sclerosis Through Social Listening: Complementing Traditional HRQoL Measures
Author(s)
Jackie Cuyvers, MBA1, Abhinab Bhanja2.
1Convosphere, London, United Kingdom, 2Bangalore, India.
1Convosphere, London, United Kingdom, 2Bangalore, India.
OBJECTIVES: Standard health-related quality of life (HRQoL) instruments such as FACIT-F are widely used in clinical and economic evaluations of multiple sclerosis (MS) treatments. However, these surveys often fail to reflect patients’ lived experiences with dynamic, overlapping burdens. This study examines how retrospective social media data can be leveraged to complement conventional HRQoL assessments, offering a more nuanced, patient-centred view of the quality of life impacts of MS.
METHODS: A retrospective social listening analysis was conducted across public online platforms (Twitter, forums, blogs, and YouTube) from 8,000 posts in the U.S. between January and December 2019. Using qualitative content analysis, we evaluated patient-centric posts (N=500) discussing living with MS. Thematic manual coding identified physical, emotional, social, and financial impacts aligned with QoL domains, with sentiment analysis used to track emotional burden across the patient journey.
RESULTS: Physical symptoms including mobility loss and fatigue were the most frequently reported QoL concerns (65%), followed by emotional distress (34%), financial strain (17%), and social isolation (6%). Social listening uncovered nuanced challenges often underrepresented in structured surveys, such as stigma related to invisible symptoms, mistrust in healthcare systems, and trade-offs between treatment efficacy and quality of life due to side effects. Emotional sentiment was most negative in the pre-diagnosis phase, shifting to cautious optimism post-treatment initiation. This revealed real-world struggles with medication adherence, health system navigation, and unmet needs around awareness, insurance, and functional independence.
CONCLUSIONS: Social listening as a complement to traditional QoL metrics uncovers the lived experiences of MS patients not captured in structured instruments. This analytic framing, focused on comparative value in QoL measurement, has not been previously presented and offers novel insights for HEOR applications.
METHODS: A retrospective social listening analysis was conducted across public online platforms (Twitter, forums, blogs, and YouTube) from 8,000 posts in the U.S. between January and December 2019. Using qualitative content analysis, we evaluated patient-centric posts (N=500) discussing living with MS. Thematic manual coding identified physical, emotional, social, and financial impacts aligned with QoL domains, with sentiment analysis used to track emotional burden across the patient journey.
RESULTS: Physical symptoms including mobility loss and fatigue were the most frequently reported QoL concerns (65%), followed by emotional distress (34%), financial strain (17%), and social isolation (6%). Social listening uncovered nuanced challenges often underrepresented in structured surveys, such as stigma related to invisible symptoms, mistrust in healthcare systems, and trade-offs between treatment efficacy and quality of life due to side effects. Emotional sentiment was most negative in the pre-diagnosis phase, shifting to cautious optimism post-treatment initiation. This revealed real-world struggles with medication adherence, health system navigation, and unmet needs around awareness, insurance, and functional independence.
CONCLUSIONS: Social listening as a complement to traditional QoL metrics uncovers the lived experiences of MS patients not captured in structured instruments. This analytic framing, focused on comparative value in QoL measurement, has not been previously presented and offers novel insights for HEOR applications.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR75
Topic
Methodological & Statistical Research, Patient-Centered Research, Real World Data & Information Systems
Topic Subcategory
Instrument Development, Validation, & Translation, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Neurological Disorders