Abstract and Introduction
Background: The photodermatoses affect large proportions of the population but their impact on quality of life (QoL) and psychological health has not been reviewed. Several tools are available to evaluate QoL and psychological impacts.
Objectives: To systematically review current literature to identify tools used to assess QoL and psychological impacts in patients with photodermatoses, and to summarize the reported findings.
Methods: A systematic search of PubMed, OVID Medline, PsycInfo and CINAHL was performed for articles investigating QoL and/or psychological impact in patients with photodermatoses, published between 1960 and September 2018.
Results: Twenty studies were included: 19 incorporated QoL assessment while three evaluated psychological morbidity. Six QoL tools were found to be used: Dermatology Life Quality Index (DLQI), Children's DLQI, Family DLQI, Skindex (16- and 29-item versions), Erythropoietic Protoporphyria Quality of Life (EPP-QoL) and EuroQol. Between 31% and 39% of photosensitive patients reported a very large impact on QoL (DLQI > 10). Employment and education, social and leisure activities, and clothing choices were particularly affected. Only one tool was specifically designed for a photodermatosis (EPP-QoL). Four tools were used to evaluate psychological impact: the Hospital Anxiety and Depression Scale, Fear of Negative Evaluation, brief COPE and Illness Perception Questionnaire-Revised. Levels of anxiety and depression were approximately double British population data. Patients with facial involvement, female gender and younger age at onset showed more psychological morbidity.
Conclusions: Several tools have been used to assess QoL in the photodermatoses, and confirm substantial impact on QoL. Development of specific, validated QoL measures would address their unique impacts. Research delineating their psychological comorbidity is sparse and requires further exploration.
The photodermatoses comprise abnormal cutaneous reactions to the ultraviolet and/or visible radiation components of sunlight. Despite the fact that they affect a large proportion of the population, their impacts can be literally 'hidden', because patients may stay indoors or extensively cover their skin to avoid sunlight (Figure 1).
Illustration of the severe modifications that (a) adults and (b) children with photosensitivity disorders may need to make, with high negative consequences for their daily lives.
Photodermatoses can be (i) immunologically mediated – including polymorphic light eruption (PLE), actinic prurigo (AP), solar urticaria (SU) and chronic actinic dermatitis (CAD); (ii) metabolic disorders, including porphyrias; (iii) drug or chemical induced, including systemic or contact photoallergy; (iv) defective DNA repair disorders, including xeroderma pigmentosum (XP); and (v) photoaggravated disorders, including eczema, psoriasis and connective tissue disease.[1,2] While PLE is common, occurring in around 18% of Europeans, several rare conditions occur, such as erythropoietic protoporphyria (EPP) and SU, with U.K. prevalence estimates of 0·7 per 100 000 and 3·1 per 100 000, respectively.
Sunlight is the principal trigger of symptoms, although occasionally artificial radiation sources may also be responsible. Ultraviolet A and visible radiation pass through most window glass; consequently patients can face considerable challenges indoors and in vehicles, as well as outdoors. Several conditions are exquisitely photosensitive and may occur year round, whereas others occur seasonally, and less severely affected patients may be principally affected on sunny holidays.
Impacts of skin disorders may result from clinical features or management approaches, with negative consequences for health-related quality of life (HRQoL) and social and psychological health.[6,7] While quality of life (QoL) and HRQoL are sometimes used interchangeably, QoL refers to someone's broad life evaluation in the context of their values, goals or expectations, whereas HRQoL refers to the impact of a disease or illness on key aspects of physical, social and psychological functioning (Figure 2). Assessment tools used in dermatology evaluate HRQoL, which for consistency with the dermatology literature we refer to here as QoL. Dermatology patients experience impaired QoL and greater psychological morbidity than the general population.[9–11] Overall disability from skin conditions is strongly influenced by psychological functioning, including psychological comorbidity.[12–14]
Demonstration of how health-related quality of life relates to physical, social and psychological functioning (authors' schema).
Photodermatoses pose unique challenges. Behavioural modification is often necessary to avoid triggering or exacerbation by ultraviolet and/or visible radiation, such as minimizing time outdoors, seeking shade, avoiding certain indoor lighting, using protective clothing and frequent sunscreen application. These measures can be highly restrictive for patients, affecting employment, schooling, and social and family activities.[15,16] Despite this, there are limited data describing the impact of photosensitivity disorders on QoL and psychological health.
We conducted a systematic review to (i) identify tools used for assessment of QoL and psychological function in patients with photodermatoses and (ii) evaluate and summarize the impact of the photodermatoses on patients' QoL and psychological function.
The British Journal of Dermatology. 2020;182(5):1092-1102. © 2020 Blackwell Publishing