Psychosocial burden of autoimmune blistering diseases: A comprehensive survey study

Author:

White Marney A.12ORCID,Hoffman Victoria M.3,Yale Marc4,Strong Rebecca4,Tomayko Mary M.5

Affiliation:

1. Department of Social and Behavioral Sciences Yale School of Public Health New Haven Connecticut USA

2. Department of Psychiatry Yale School of Medicine New Haven Connecticut USA

3. Jacobs School of Medicine University of Buffalo Getzville New York USA

4. International Pemphigus & Pemphigoid Foundation Roseville California USA

5. Department of Dermatology Yale School of Medicine New Haven Connecticut USA

Abstract

AbstractBackgroundAutoimmune blistering diseases (AIBDs) are severe dermatologic disorders known for their debilitating physical impact. Recent research has reported that AIBDs lead to psychosocial impairment, including depression and anxiety. Missing from the extant literature is an examination of the impact of AIBDs on body image and related psychological constructs.ObjectivesThe current study seeks to characterize the psychological and social consequences of AIBD diagnosis, with particular attention to body image dissatisfaction.MethodsWe conducted a survey study of adults with AIBDs. The survey was open from February 2023 to March 2023. Validated self‐report questionnaires assessed depressive symptomatology, body image disturbance and quality of life. Demographic information and self‐reported psychiatric history before and after AIBD diagnosis were collected via self‐report. Participants were 451 adults with AIBDs, recruited through the International Pemphigus and Pemphigoid Foundation newsletters, email distribution lists and social media.ResultsParticipants reported increased incidence of psychiatric disorders following AIBD diagnosis. Participants reported high levels of depressive symptomatology and impairments to quality of life compared to other patient groups. The sample reported extremely high levels of body image disturbance, more so than other patients with disfiguring diseases or injury. Correlation analyses revealed significant relationships between body image variables and quality of life, even after controlling for depression.ConclusionsCurrent treatment guidelines for AIBDs focus primarily on the management of disease flares and the consequences of immunosuppression, without consideration of the psychosocial consequences of the disease. The current study underscores the need for mental health support for patients with AIBDs.

Publisher

Wiley

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