A review of studies looking at quality of life and psychological impact in people with photodermatoses – skin diseases triggered by sunlight

Abstract

Summary Photodermatoses, or photosensitivity conditions, are a group of skin disorders caused by exposure to sunlight, overall affecting a large number of people. They cause a range of distressing symptoms including pain and burn, and can make the skin blister, flake and scar. The conditions themselves and the need for patients to avoid and protect themselves from sunlight may affect quality of life and psychological health. This study, from the U.K., aimed to find out what methods of assessment (tools) have been used to evaluate quality of life and psychological health in photodermatoses, and report what the impact is for patients. The authors reviewed relevant published English‐language studies and summarised their findings. 20 studies were included: 19 assessing quality of life and three assessing psychological function. Six different tools had been used to assess quality of life, and four different tools to assess psychological health. It was shown that 31‐39% of patients with photodermatoses experienced a very large impact on their quality of life. There was a particular impact on issues related to employment, social/leisure activities and clothing choices. Patients had around double the rates of anxiety and depression found in the general population, although few studies focussed on psychological health. The authors also noted that most available tools were not designed to address the unique impact of intermittent sunlight‐induced skin conditions and suggested that development of more specific tools could be beneficial. In conclusion, this study confirmed that patients with photodermatoses experience substantial impact on their quality of life and that more research is needed. This is a summary of the study: Quality of life and psychological impact in the photodermatoses: a systematic review.

Erythropoietic protoporphyria in the Netherlands: Clinical features, psychosocial impact and the effect of afamelanotide

“…It is encouraging to see that afamelanotide treatment results in significant improvements on social functioning, giving EPP patients the opportunity to finally participate in more ‘normal’ activities. The findings of this study are in line with previous studies regarding the quality of life in photodermatosis in general, which has shown a very large impact on QoL, with particular effects on employment and social and leisure activities, next to suggested higher anxiety and depression levels 32,33 …”

“…The findings of this study are in line with previous studies regarding the quality of life in photodermatosis in general, which has shown a very large impact on QoL, with particular effects on employment and social and leisure activities, next to suggested higher anxiety and depression levels. 32,33 This EPP cohort is comparable in age, contribution of males and females, and ethnicity to previously reported cohorts. 2,28,34,35 It is important to note that more than a third of the patients also report EPP symptoms during autumn and winter, considering the fact that afamelanotide prescriptions are restricted to maximum four times a year.…”

Systematic review of the prevalence and incidence of the photodermatoses with meta‐analysis of the prevalence of polymorphic light eruption

“…Photodermatoses have a considerable negative impact on quality of life and psychological well‐being 4,5 . A recent systematic review found one‐third of patients with photodermatoses experienced a ‘very large’ or ‘extremely large’ impact on quality of life; that is, with a Dermatology Life Quality Index (DLQI) score > 10 6 . Patients experience a range of distressing symptoms upon or following sun exposure.…”

“…Central to the management of many photodermatoses is advice to reduce sun exposure in the summer months, which may involve behavioural modification such as staying indoors, extensively covering the skin and frequent application of sunscreen, in order to avoid triggering or exacerbating disease. These preventive measures themselves contribute to a significant psychological, social and economic impact, including reduced levels of employment 6,7 …”

Selected therapeutic methods affecting the health and quality of life of chronically dermatologically ill people

“…According to the definition adopted by the American Commission on Chronic Illness, chronic disorders are those disorders or deviations from the norm that have one or more of the following characteristics: they have a long or lasting course; their aetiology, course and treatment are not clearly defined; they leave behind a dysfunction or disability; and they require specialised management. Thus, such people must cope not only with the side effects of treatment in the physical dimension, such asa significant decrease in immunity, general weakness of the body and thus a decrease in physical condition, but also in the mental and social dimensions, such as accepting changes in body appearance and changes in functioning in social roles [14,15].…”