Bullous Dermatoses and Quality of Life: A Summary of Tools to Assess Psychosocial Health
Autoimmune bullous dermatoses (ABDs), such as pemphigus and bullous pemphigoid (BP), cause cutaneous lesions that are painful and disfiguring. These conditions affect a patient’s ability to perform everyday tasks, and individual lesions can take years to heal. Multiple small studies have examined how these conditions affect a patient’s lifestyle. We systematically reviewed the trials that have evaluated the mental health of patients with bullous dermatoses. Of the 13 studies assessed, 2 domains of interest were primarily evaluated: quality of life (QOL) and psychological state. Quality of life predominantly was analyzed using the Dermatology Life Quality Index (DLQI). To evaluate psychological state, the General Health Questionnaire (GHQ) primarily was utilized. This review informs providers and summarizes the various ways that ABDs affect mental health.
Practice Points
- Autoimmune bullous dermatoses cause cutaneous lesions that are painful and disfiguring. These conditions affect a patient’s ability to perform everyday tasks, and individual lesions can take years to heal.
- Providers should take necessary steps to address patient well-being, especially at disease onset in patients with bullous dermatoses.
To evaluate psychological state, the General Health Questionnaire (GHQ)-28 and -12 primarily were used, in addition to the Hospital Anxiety and Depression Scale; the International Classification of Diseases, Tenth Revision; the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition; and the Beck Depression Inventory-II. As seen in Table 3, GHQ-12 positivity, reflecting probable minor nonpsychotic psychiatric disorders such as depression and anxiety, was identified in 47%, 39.7%, and 40% of patients with pemphigus15,19,24; GHQ-28 positivity was seen in 77.5% of pemphigus patients.18 In the average population, GHQ positivity was found in up to 12% of patients.26,27 Similar to the QOL scores, no significant differences were seen based on subtype of pemphigus for symptoms of depression or anxiety.20,23
Comment
Mental Health of Patients With ABDs—Immunobullous diseases are painful, potentially lifelong conditions that have no definitive cure. These conditions are characterized by bullae and erosions of the skin and mucosae that physically are disabling and often create a stigma for patients. Across multiple different validated psychosocial assessments, the 13 studies included in this review consistently reported that ABDs have a negative effect on mental well-being of patients that is more pronounced in women and worse at the onset of symptoms.13-25
QOL Scores in Patients With ABDs—Quality of life is a broad term that encompasses a general sense of psychological and overall well-being. A score of approximately 10 on the DLQI most often was reported in patients with ABDs, which translates to a moderate impact on QOL. Incomparison, a large cohort study reported the mean (SD) DLQI scores for patients with atopic dermatitis and psoriasis as 7.31 (5.98) and 5.93 (5.66), respectively.28 In another study, Penha et al14 found that patients with psoriasis have a mean DLQI score of 10. Reasons for the similarly low QOL scores in patients with ABDs include long hospitalization periods, disease chronicity, social anxiety, inability to control symptoms, difficulty with activities of daily living, and the belief that the disease is incurable.17,19,23 Although there is a need for increased family and social support with performing necessary daily tasks, personal relationships often are negatively affected, resulting in social isolation, loneliness, and worsening of cutaneous symptoms.
Severity of cutaneous disease and recent onset of symptoms correlated with worse QOL scores. Tabolli et al20 proposed the reason for this relates to not having had enough time to find the best treatment regimen. We believe there also may be an element of habituation involved, whereby patients become accustomed to the appearance of the lesions over time and therefore they become less distressing. Interestingly, Tabolli et al17 determined that patients in the quiescent phase of the disease—without any mucosal or cutaneous lesions—still maintained lower QOL scores than the average population, particularly on the psychosocial section of the 36-Item Short Form Health Survey, which may be due to a concern of disease relapse or from adverse effects of treatment. Providers should monitor patients for mental health complications not only in the disease infancy but throughout the disease course.
Future Directions—Cause and effect of the relationship between the psychosocial variables and ABD disease state has yet to be determined. Most studies included in this review were cross-sectional in design. Although many studies concluded that bullous dermatoses were the cause of impaired QOL, Ren and colleagues29 proposed that medications used to treat neuropsychiatric disorders may trigger the autoimmune antigens of BP. Possible triggers for BP have been reported including hydrochlorothiazide, ciprofloxacin, and dipeptidyl peptidase-4 inhibitors.27,30-32 A longitudinal study design would better evaluate the causal relationship.