INTRODUCTION
Central Centrifugal Cicatricial Alopecia (CCCA) is a progressive form of scarring alopecia that primarily affects women of African descent.1 CCCA can be diagnosed clinically through scalp examination and trichoscopy. Scalp examination typically reveals the classic distribution of hair loss, beginning at the vertex of the scalp with progressive, symmetric centrifugal evolution. Trichoscopy may show a peripilar gray or white halo around the base of the hair follicles.2 However, CCCA may also present with atypical distributions of hair loss, such as patchy, temporal, occipital, and frontal-parietal patterns, which pose a diagnostic challenge.3-5 In such cases, scalp biopsies are crucial for accurate and timely diagnosis of CCCA, as they minimize further hair loss and associated morbidity. Despite their clinical value, patients may be hesitant to undergo scalp biopsy due to concerns about side effects, scarring, or the potential for additional hair loss.
Patient perspectives on biopsies have been studied in other contexts (eg, breast cancer, colon cancer); however, no research has focused on patient perspectives regarding the scalp biopsy process for hair loss, particularly in those with CCCA. Therefore, a qualitative, cross-sectional study was designed to assess patient perspectives on scalp biopsies to diagnose CCCA. An anonymous survey was distributed to patients with CCCA at University of Pennsylvania-affiliated dermatology clinics, including those who had and had not undergone a scalp biopsy. Patient knowledge, attitudes, and concerns regarding scalp biopsies and factors influencing their decision-making were evaluated.
Among biopsy patients (n=30), 90% agreed that a biopsy was necessary to confirm their diagnoses, compared to just 30% of non-biopsy patients (n=10) (see Table 1). Similarly, 83% of biopsy patients strongly preferred biopsy over diagnostic uncertainty, highlighting its perceived value in clarifying disease status. Notably, provider education and communication played a critical role. Over 85% of biopsy patients felt their dermatologist adequately explained the procedure and clearly communicated the results. In contrast, 70–90% of non-biopsy patients reported neutral responses regarding biopsy purpose, treatment implications, and overall understanding. This suggests that refusal of biopsy may reflect gaps in patient education rather than true opposition.
Despite these gaps, 68% of all participants indicated willingness to undergo biopsy if their condition worsened, emphasizing a potential openness to the procedure when supported by a clear rationale or need (see Table 1). Importantly, no respondents reported feeling coerced, reinforcing that patient autonomy was preserved during all visits. Additionally, 77% of biopsy patients conducted independent research after diagnosis, indicating an area for improvement in post-diagnostic counseling and education (see Table 2).
Our study highlights the crucial role of effective clinician-patient communication in shaping attitudes toward scalp biopsy for CCCA. Patients who undergo biopsy demonstrate greater understanding, trust, and willingness to accept diagnostic interventions, whereas those who decline often lack the information needed to make informed choices. Enhancing patient education and offering accessible, vetted resources could bridge this divide. By positioning the biopsy as a tool for early intervention, dermatologists can support shared decision-making and improve diagnostic outcomes in this patient population.
Patient perspectives on biopsies have been studied in other contexts (eg, breast cancer, colon cancer); however, no research has focused on patient perspectives regarding the scalp biopsy process for hair loss, particularly in those with CCCA. Therefore, a qualitative, cross-sectional study was designed to assess patient perspectives on scalp biopsies to diagnose CCCA. An anonymous survey was distributed to patients with CCCA at University of Pennsylvania-affiliated dermatology clinics, including those who had and had not undergone a scalp biopsy. Patient knowledge, attitudes, and concerns regarding scalp biopsies and factors influencing their decision-making were evaluated.
Among biopsy patients (n=30), 90% agreed that a biopsy was necessary to confirm their diagnoses, compared to just 30% of non-biopsy patients (n=10) (see Table 1). Similarly, 83% of biopsy patients strongly preferred biopsy over diagnostic uncertainty, highlighting its perceived value in clarifying disease status. Notably, provider education and communication played a critical role. Over 85% of biopsy patients felt their dermatologist adequately explained the procedure and clearly communicated the results. In contrast, 70–90% of non-biopsy patients reported neutral responses regarding biopsy purpose, treatment implications, and overall understanding. This suggests that refusal of biopsy may reflect gaps in patient education rather than true opposition.
Despite these gaps, 68% of all participants indicated willingness to undergo biopsy if their condition worsened, emphasizing a potential openness to the procedure when supported by a clear rationale or need (see Table 1). Importantly, no respondents reported feeling coerced, reinforcing that patient autonomy was preserved during all visits. Additionally, 77% of biopsy patients conducted independent research after diagnosis, indicating an area for improvement in post-diagnostic counseling and education (see Table 2).
Our study highlights the crucial role of effective clinician-patient communication in shaping attitudes toward scalp biopsy for CCCA. Patients who undergo biopsy demonstrate greater understanding, trust, and willingness to accept diagnostic interventions, whereas those who decline often lack the information needed to make informed choices. Enhancing patient education and offering accessible, vetted resources could bridge this divide. By positioning the biopsy as a tool for early intervention, dermatologists can support shared decision-making and improve diagnostic outcomes in this patient population.
