Skin-Related Quality of Life Worsens With Autoimmune Bullous Disease Flare-Ups

Skin-related quality of life (SRQL) may be associated with flare-ups in patients with autoimmune bullous diseases (AIBDs), suggesting how early measurements of SRQL may inform patients and their doctors about disease severity.

“Similar to other HRQL [health-related quality of life] studies in AIBD, we found a significant association of HRQL with all disease subtypes, especially during patient-reported flares,” wrote the authors of the study. “We found generally favorable psychometric findings for the Skindex-16, including high internal consistency, large known-group differences, supportive convergent and divergent validity, and a low frequency of ceiling responses.”

This cross-sectional study was published in JAMA Dermatology.

AIBDs are rare and occur from pathogenic autoantibodies that lead to either mechanical disruption of cell surface connections or activation of immune cascades that damage basement membrane components and result in cutaneous blisters.

A dermatologist wearing gloves examines the skin of a sick patient. Examination and diagnosis of skin diseases-allergies, psoriasis, eczema, dermatitis | Image credit: fusssergei - stock.adobe.com

In this study, the researchers aimed to evaluate overall and disease-specific distributions of Skindex-16 scores across AIBD subtypes as an SRQL measure during flare and nonflare states.

The study was conducted from September 1, 2016, to February 1, 2020, including a total of 192 patients and 212 visits from the University of Utah Health. Patients enrolled in the study had pemphigoid, pemphigus, dermatitis herpetiformis, or linear immunoglobulin A disease.

Skindex-16 data included information pertaining to a patient’s emotions, symptoms, and functioning, ranging from 0 to 100 with 0 indicating no SRQL effect. All Skindex-16 scores were obtained using the MyChart electronic health platform. A flare-up was defined using self-reported answers of either yes or no by the patient.

Statistical analysis was performed from March 2022 to June 2023.

Of these patients, 64 were in a flare-up state and 148 were not. Compared with those in a nonflare state, median Skindex-16 scores were higher for all disease categories among patients in the flare state.

For example, patients with pemphigoid in a flare state had higher Skindex-16 scores for emotions (median [IQR], 52.4 [38.1-69.0]), symptoms (37.5 [29.2-58]), and functioning (26.7 [13.3-83.3]) compared with patients in a nonflare state (emotions: 7 [0-17]; symptoms: 13 [0-25]; functioning: 0 [0-3]).

Furthermore, the researchers identified a strong correlation between Skindex-16 and Patient-Reported Outcomes Measurement Information System Depression scores for emotions (ρ = .40), symptoms (ρ = .41), and functioning (ρ = .48), as well as a strong correlation between Skindex-16 and patient-reported disease severity for emotions (ρ = .71), symptoms (ρ = .73), and functioning (ρ = .66).

The researchers also acknowledged some limitations to the study, including the potential differences in disease status, treatments available, time with the disease, and heterogenous patient characteristics. Additionally, the researchers could not confirm the degrees of agreement between patient-reported and clinician-measured flares, which could weaken validity if a significant portion of patient-reported flares were not true disease flares.

Despite these limitations, the researchers believe the study adds insight into the use of Skindex-16 scores as an SRQL measure for patients with AIBD, leading the way for future studies surrounding this topic.

Reference

Hopkins ZH, Jimenez A, Taliercio VL, et al. Skin-related quality of life during autoimmune bullous disease course. JAMA Dermatol. Published online September 13, 2023. doi:10.1001/jamadermatol.2023.3121