THE HIDDEN PATIENT BURDEN IN ALOPECIA AREATA AND VITILIGO: IDENTIFYING GAPS IN ROUTINE DATA CAPTURE
Author(s)
Rachel J. Dockry, PhD1, Anthony Bewley, MB ChB, FRCP22, Marie Keetley, BSc1, Fiona C. Glen, PhD1.
1Spark Evidence LTD, Cheltenham, United Kingdom, 2Barts Health NHS Trust, London, United Kingdom.
1Spark Evidence LTD, Cheltenham, United Kingdom, 2Barts Health NHS Trust, London, United Kingdom.
OBJECTIVES: Alopecia areata (AA) and vitiligo confer patient burden, including psychosocial and quality-of-life (QoL) impacts. While real-world evidence (RWE) is used in clinical research and health technology assessment (HTA), it is unclear how well routine data reflect patient experience. This review aimed to identify key patient-reported burden domains and map these to outcomes captured in routine data.
METHODS: A targeted literature review was conducted in PubMed (1999-2026) using pre-defined criteria. Searches included qualitative, patient-reported outcome (PRO), economic/time burden, and RWE studies from routine data (claims, electronic health records, registries). Studies reporting burden or QoL in AA/vitiligo were included. Burden domains were identified via thematic analysis until saturation and mapped to routine data using three-level classification: “directly captured”, “indirectly proxied”, or “not captured”.
RESULTS: Of 1220 abstracts, 87 were included. Evidence showed multidimensional burden. PROs captured stigma, depression and anxiety, but some impacts were partially represented. Qualitative data highlighted effects on major life decisions (education, career, relationships), with no routine data proxies. Bullying was reported but not captured in PROs/RWE. Routine data captured clinical outcomes (via coding), comorbidities (including mental health diagnoses), absenteeism (financial/societal burden proxy) and healthcare utilisation. However, qualitative evidence indicated utilisation may reflect reduced healthcare seeking and disengagement, not system-level burden driven by monitoring or acute events. Time burden (e.g. concealment) and out-of-pocket costs (e.g. cosmetic camouflage) were not represented. Mental health burden was inconsistently recorded, with diagnoses capturing only part of patient-reported distress.
CONCLUSIONS: These findings highlight a systematic misalignment between patient experience and routine data in AA and vitiligo and indicate reliance on routine data alone likely underestimates unmet need. Routine sources overlook burden domains patients prioritise most: life-course disruption, financial sacrifice, and social withdrawal. Critically, low healthcare utilisation may signal disengagement rather than low need, risking misinterpretation in HTA contexts. Incorporating patient-reported and qualitative evidence may improve HTA decision-making.
METHODS: A targeted literature review was conducted in PubMed (1999-2026) using pre-defined criteria. Searches included qualitative, patient-reported outcome (PRO), economic/time burden, and RWE studies from routine data (claims, electronic health records, registries). Studies reporting burden or QoL in AA/vitiligo were included. Burden domains were identified via thematic analysis until saturation and mapped to routine data using three-level classification: “directly captured”, “indirectly proxied”, or “not captured”.
RESULTS: Of 1220 abstracts, 87 were included. Evidence showed multidimensional burden. PROs captured stigma, depression and anxiety, but some impacts were partially represented. Qualitative data highlighted effects on major life decisions (education, career, relationships), with no routine data proxies. Bullying was reported but not captured in PROs/RWE. Routine data captured clinical outcomes (via coding), comorbidities (including mental health diagnoses), absenteeism (financial/societal burden proxy) and healthcare utilisation. However, qualitative evidence indicated utilisation may reflect reduced healthcare seeking and disengagement, not system-level burden driven by monitoring or acute events. Time burden (e.g. concealment) and out-of-pocket costs (e.g. cosmetic camouflage) were not represented. Mental health burden was inconsistently recorded, with diagnoses capturing only part of patient-reported distress.
CONCLUSIONS: These findings highlight a systematic misalignment between patient experience and routine data in AA and vitiligo and indicate reliance on routine data alone likely underestimates unmet need. Routine sources overlook burden domains patients prioritise most: life-course disruption, financial sacrifice, and social withdrawal. Critically, low healthcare utilisation may signal disengagement rather than low need, risking misinterpretation in HTA contexts. Incorporating patient-reported and qualitative evidence may improve HTA decision-making.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR201
Topic
Patient-Centered Research, Real World Data & Information Systems, Study Approaches
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Sensory System Disorders (Ear, Eye, Dental, Skin), Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)