Bullous Dermatoses and Quality of Life: A Summary of Tools to Assess Psychosocial Health

Skin-Related Quality of Life During Autoimmune Bullous Disease Course

“…As with other studies, we observed a higher average association of SRQL with pemphigus compared with pemphigoid. 5,6,[10][11][12]15 Fewer studies have reported an asso-ciation of SRQL with DH and LABD, and we found these associations to be high. 11 In general, emotional SRQL and symptoms-related SRQL were more associated with disease flares than functional SRQL.…”

“…11 In general, emotional SRQL and symptoms-related SRQL were more associated with disease flares than functional SRQL. 10,12 Unique differences in SRQL and individual items were found between disease types when stratified by flare state (Table 2; eTable 2 in Supplement 1). During the nonflare state, pemphigus had the lowest association with SRQL (especially PV), perhaps owing to the effectiveness of rituximab in significantly improving disease despite high severity during patient-perceived flares.…”

“…Autoimmune bullous diseases arise 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 . With the advent of effective immunosuppressive therapy, disease-specific mortality is now relatively low, but patient health-related quality of life (HRQL) can still be highly affected …”

“…[1][2][3] With the advent of effective immunosuppressive therapy, disease-specific mortality is now relatively low, but patient health-related quality of life (HRQL) can still be highly affected. [4][5][6][7][8][9][10][11][12][13] Treatment guidelines for AIBD note that "improvement in HRQL" is a primary goal of management, 14 yet HRQL monitoring and research in AIBD remains sparse. [11][12][13]15 This may stem from the rarity of these diseases, their unique site involvement (mucosal vs cutaneous), 16,17 instrument choice, and how to effectively use scores for clinical decision-making.…”

“…[4][5][6][7][8][9][10][11][12][13] Treatment guidelines for AIBD note that "improvement in HRQL" is a primary goal of management, 14 yet HRQL monitoring and research in AIBD remains sparse. [11][12][13]15 This may stem from the rarity of these diseases, their unique site involvement (mucosal vs cutaneous), 16,17 instrument choice, and how to effectively use scores for clinical decision-making. Two disease-specific validated tools for quality of life (QOL) patient-reported outcomes (PROs) exist for AIBD: the Autoimmune Bullous Disease Quality of Life (ABQOL) questionnaire and the Treatment of Autoimmune Bullous Disease Quality of Life (TABQOL) questionnaire.…”