REAL-WORLD PATIENT VOICE IN FERTILITY CARE: CHARACTERISING UNMET INFORMATIONAL, EMOTIONAL, DECISIONAL, AND NAVIGATIONAL NEEDS FROM SOCIAL MEDIA TO INFORM PATIENT-CENTRED CARE PATHWAYS...
Author(s)
Varsha Patial, BAMS, MBA1, Rushabh Mehta, Post Graduate Program2, Vaidehi Ketkar, BDS3, Sonali Mhatre, BHMS3, Rahul Srivastava, BTech, MBA4.
1AKSIGEN IVF, Mumbai, India, 2SIROai, MUMBAI, India, 3AKSIGEN IVF, MUMBAI, India, 4SIRO Clinpharm, MUMBAI, India.
1AKSIGEN IVF, Mumbai, India, 2SIROai, MUMBAI, India, 3AKSIGEN IVF, MUMBAI, India, 4SIRO Clinpharm, MUMBAI, India.
OBJECTIVES: Fertility care evidence is dominated by clinical-outcome metrics, while patient-articulated concerns - what patients struggle to understand, emotionally process, and decide about - remain inconsistently captured. This study characterized informational, emotional, decisional, and navigational needs voiced by fertility patients on social media to identify actionable targets for patient education, care-pathway redesign, and value delivery.
METHODS: Reddit and YouTube - platforms where fertility patients articulate concerns unprompted - captured naturalistic patient voice from English-language, digitally-engaged populations. A corpus of 22,619 posts (Reddit n=13,905; YouTube n=8,714) was assembled from 109,889 raw items through deduplication, subreddit/channel filtering, and keyword-based content filtering. A four-domain codebook was validated using a two-stage design: development sample (n=111) for codebook refinement and held-out sample (n=80) excluded from development. Inter-rater agreement was high in both stages (κ=0.88-1.00). A large language model performed AI-assisted classification; on held-out sample, AI-human agreement met pre-specified threshold (κ≥0.60) on all six dimensions (navigation κ=0.94-1.00). Domain frequencies used 95% Wilson CIs; platform differences used chi-square.
RESULTS: 10,772/22,619 items (47.6%) expressed a classifiable unmet need. Information Gaps dominated (77.5%, 95%CI 76.7-78.3), followed by Emotional Distress (54.7%, 53.8-55.7), Decision Conflict (25.3%, 24.5-26.1), and Navigation (14.0%, 13.4-14.7). Within Information Gaps, top three pre-specified subthemes were treatment process (37.9%), medication protocols (33.6%), and IVF appropriateness (30.4%). Information Gaps and Emotional Distress co-occurred in 38.2% of items. Platform patterns differed significantly (all p<0.001): Reddit hosted more emotional and decisional content; YouTube contained more navigational queries.
CONCLUSIONS: Information gaps are the dominant unmet need in fertility care, with treatment process, medication protocols, and IVF-appropriateness most prevalent. The 38.2% co-occurrence with emotional distress generates a testable hypothesis: informational interventions targeting these subthemes may reduce uncertainty-linked psychological burden, warranting prospective evaluation. Because uncertainty-driven discontinuation drives cumulative-cycle cost-ineffectiveness in ART, information-gap interventions represent low-cost levers to improve treatment completion and value delivery, particularly in self-pay APAC markets.
METHODS: Reddit and YouTube - platforms where fertility patients articulate concerns unprompted - captured naturalistic patient voice from English-language, digitally-engaged populations. A corpus of 22,619 posts (Reddit n=13,905; YouTube n=8,714) was assembled from 109,889 raw items through deduplication, subreddit/channel filtering, and keyword-based content filtering. A four-domain codebook was validated using a two-stage design: development sample (n=111) for codebook refinement and held-out sample (n=80) excluded from development. Inter-rater agreement was high in both stages (κ=0.88-1.00). A large language model performed AI-assisted classification; on held-out sample, AI-human agreement met pre-specified threshold (κ≥0.60) on all six dimensions (navigation κ=0.94-1.00). Domain frequencies used 95% Wilson CIs; platform differences used chi-square.
RESULTS: 10,772/22,619 items (47.6%) expressed a classifiable unmet need. Information Gaps dominated (77.5%, 95%CI 76.7-78.3), followed by Emotional Distress (54.7%, 53.8-55.7), Decision Conflict (25.3%, 24.5-26.1), and Navigation (14.0%, 13.4-14.7). Within Information Gaps, top three pre-specified subthemes were treatment process (37.9%), medication protocols (33.6%), and IVF appropriateness (30.4%). Information Gaps and Emotional Distress co-occurred in 38.2% of items. Platform patterns differed significantly (all p<0.001): Reddit hosted more emotional and decisional content; YouTube contained more navigational queries.
CONCLUSIONS: Information gaps are the dominant unmet need in fertility care, with treatment process, medication protocols, and IVF-appropriateness most prevalent. The 38.2% co-occurrence with emotional distress generates a testable hypothesis: informational interventions targeting these subthemes may reduce uncertainty-linked psychological burden, warranting prospective evaluation. Because uncertainty-driven discontinuation drives cumulative-cycle cost-ineffectiveness in ART, information-gap interventions represent low-cost levers to improve treatment completion and value delivery, particularly in self-pay APAC markets.
Conference/Value in Health Info
2026-09, ISPOR Asia Pacific 2026, Bangkok, Thailand
Value in Health, Volume 55, Issue S1
Code
PCR34
Topic
Patient-Centered Research
Disease
SDC: Reproductive & Sexual Health