The Lived Experience of Patients Diagnosed with Vitiligo and a Preliminary Conceptual Disease Model: Insights from Patients, Patient Advocates, and Clinicians.

Introduction: Patients with vitiligo experience high disease and psychosocial burden, and dissatisfaction with current treatment options, highlighting a need to understand the disease from a patient perspective. This study gathered insights from key opinion leaders (KOLs) and patient advocates on a conceptual disease model of vitiligo and gained patient perspectives through qualitative interviews on the disease burden and concepts important to patients with nonsegmental vitiligo (NSV), and what degree and anatomical location of repigmentation may constitute a meaningful change with treatment.

Methods: This cross-sectional, observational study involved virtual, semi-structured, qualitative interviews with expert KOLs treating patients with vitiligo, patient advocates, and patients diagnosed with NSV.

Results: Patient advocates (n = 5) and KOLs (n = 6) felt that the conceptual disease model comprehensively captured the signs, symptoms, and impact of vitiligo, and had minor changes including reordering symptoms. Of 22 patients interviewed, most experienced depigmentation on their arms, trunk, hands, feet; and 86.4% had vitiligo on their face. The most frequently reported sign or symptom was increased sensitivity to the sun (82%). Patients reported that vitiligo broadly impacts many facets of life, most commonly emotional well-being (82%). Patients reported that perceived treatment success is driven by the extent of vitiligo repigmentation, especially on the face and hands, and would consider 20-25% repigmentation a meaningful improvement.

Conclusion: This study provides insight into the lived experience of patients with NSV, and alignment from patient advocates and KOLs on the conceptual disease model of vitiligo. The findings increase our understanding and inform vitiligo clinical studies.