Online Poster Portal

Introduction
Primary cicatricial alopecias (PCAs) are a group of inflammatory hair disorders characterized by permanent follicular destruction and irreversible hair loss, often resulting in profound and lasting psychosocial burden.¹ While the visible extent of hair loss is commonly assumed to be the primary driver of distress, emerging evidence suggests that patient experiences extend beyond objective disease severity. Prior studies have demonstrated significant impacts on quality of life, including heightened anxiety, depression, and social stigma among individuals with alopecia.¹–³ These effects are often mediated by illness perception, visibility of disease, and sociocultural factors.³ However, relatively less attention has been paid to how interactions with the healthcare system, collectively described as the “care journey,” may influence patient distress.

The care journey encompasses structural and interpersonal dimensions of care, including fragmentation across multiple providers and the quality of patient–physician communication. These factors may shape how patients understand, cope with, and emotionally respond to their condition. For example, navigating multiple physicians may reflect diagnostic uncertainty or unmet care needs, while difficulty discussing hair loss may signal communication barriers that exacerbate emotional burden. Despite their potential importance, these care-related factors have not been well-characterized in scarring alopecia populations.

We therefore sought to evaluate whether care-journey factors are associated with psychosocial distress independent of disease severity. Using data from the CAPAIR (Cicatricial Alopecia Patient-Reported Outcomes) survey, we examined whether markers of care fragmentation and communication barriers contribute additional explanatory value beyond hair loss severity alone. We hypothesized that patients experiencing higher-friction care journeys would report greater distress, even after accounting for the extent of hair loss.

Methods
We conducted a cross-sectional analysis of the 2022 CAPAIR survey of patients with scarring alopecia. Emotional distress outcomes included self-reported anxiety and sadness due to hair loss (binary). Hair loss severity was categorized (<25%, 25–50%, >50%). Care-journey variables included number of physicians seen (0–1 vs ≥2) and comfort discussing hair loss (comfortable vs not fully comfortable). Nested logistic regression models were used to evaluate associations, comparing severity only models (Model 1) to models including care-journey factors (Model 2). Model fit was assessed using likelihood ratio tests.

Results
Among 1,048 respondents, care-journey factors were strongly associated with distress independent of severity. Seeing ≥2 physicians was associated with higher odds of anxiety (OR 2.60, 95% CI 1.60–4.21) and sadness (OR 3.44, 95% CI 1.60–7.41). Not being fully comfortable discussing hair loss was also associated with anxiety (OR 2.07, 95% CI 1.42–3.00) and sadness (OR 2.52, 95% CI 1.16–5.46). Adding care-journey variables significantly improved model fit for anxiety (Δ deviance = 31.39, p = 1.53×10⁻⁷) and sadness (Δ = 16.49, p = 2.63×10⁻⁴). Predicted probabilities of distress were consistently higher in high-friction care contexts across all severity levels.

Conclusions
Care-journey factors, including care fragmentation and communication barriers, are strongly associated with psychosocial distress in scarring alopecia independent of disease severity. These findings suggest that improving continuity of care and patient–physician communication may meaningfully reduce distress. Interventions targeting the care experience may be as important as those addressing disease severity.

References

1. Saceda-Corralo D, Pindado-Ortega C, Moreno-Arrones ÓM, et al. Health-Related Quality of Life in Patients With Frontal Fibrosing Alopecia. JAMA Dermatol. 2018;154(4):479-480. doi:10.1001/jamadermatol.2017.6330. 
2. Maranga A, Roche FC, Okoye GA, et al. Quality of life in patients with central centrifugal cicatricial alopecia: a preliminary study. Br J Dermatol. 2022;187(5):802-804. 
3. Kacar SD, Soyucok E, Bagcioglu E, et al. The perceived stigma in patients with alopecia and mental disorders. Biomed Res Int. 2016;2016:8431330. 
4. Christou E, et al. Psychosocial burden and the impact of illness perceptions and stigma on quality of life, anxiety and depression in alopecia areata: results from the Alopecia + Me study. Br J Dermatol. 2025;193(3):458-467. doi:10.1093/bjd/ljaf189.