Self-reported effects of cutaneous lupus quality of life

Lupus Foundation of America

Resource Content

What is the topic?

Ultraviolet radiation from the sun can worsen symptoms of cutaneous lupus (CLE). “Photosensitivity” describes a variety of reactions to sun exposure in CLE patients and, accordingly, CLE patients may be described as being more or less “photosensitive” or not at all. However, the reported prevalence of photosensitivity among CLE patients varies widely due to a number of factors related to its measurement. 

What did the researchers hope to learn?

The researchers hoped to learn the prevalence of self-reported photosensitivity among people with lupus, as well as its effects on quality of life. The researchers also set out to determine whether clinical interview questions could successfully identify CLE patients experiencing photosensitivity and possibly relate the answers to lupus-specific skin disease activity and quality of life. 

Who was studied?

The researchers studied 169 people with CLE being treated at the Medical Dermatology Clinic of the University of Pennsylvania School of Medicine. All participants were at least 18 years of age and had some evidence of CLE or systemic lupus with skin manifestations. 

How was the study conducted?

After an initial visit to the clinic for study enrollment, participants visited the clinic thereafter if the patient experienced a change in symptoms, had a change in medication, of if it had been over a year since the last study visit. Information about participants was gathered via examination of patient history, medical records, as well as through questionnaires and a physical examination. Assessments of severity of CLE disease activity and damage were made by use of the CLE Disease Area and Severity Index (CLASI), a validated tool useful in assessing CLE severity. The impact of CLE manifestations on patient quality of life (as measured by skin disease effects on functioning, symptoms, and emotions) was assessed by use of the Skindex-29, a validated measure of skin-specific quality of life. 

Participants were also asked about smoking and sun exposure, lupus symptoms, additional autoimmune diseases (other than lupus), as well as medication effectiveness and side effects. In addition, participants were asked about their history of photosensitivity, frequency of use of sun protection, and development of lupus lesions in sun-exposed areas. Based on patient responses about their history of photosensitivity, patients were classified into one of the following groups: “photosensitive group,” “photosensitive-suggestive group,” and “non-photosensitive group.” 

What did the researchers find?

Of the 169 lupus patients that participated, 80% were women, 66% were Caucasian, 28% were African-America, 5% were Asian, and 1% were Hispanic. Also, 46% had discoid lupus (DLE), 25% had sub-acute cutaneous lupus (SCLE), and the rest had one of several additional forms of CLE such as tumid lupus, acute CLE, chronic cutaneous CLE, or non-specific CLE (less than 10% for each). 

Overall, about 68% of participants reported symptoms of photosensitivity while only 24% denied experiencing any photosensitivity. More than half of all participants having the different kinds of CLE (except DLE and chronic cutaneous CLE) reported both a history of and current photosensitivity. Based on these results, 91 participants were included in the photosensitive group. The photosensitive-suggestive group included 23 participants while the non-photosensitive group included 40 participants. 

When patients in the photosensitive group were compared to those in the non-photosensitive group, the former developed lesions in sun-exposed areas more often and more frequently engaged in sun-protective behavior than the latter. Also, patients in the photosensitive group had greater lupus-specific cutaneous disease activity (as measured by CLASI), tended to worry more about sun exposure, and indicated that their skin disease affected their outdoor activity behavior to a greater extent than patients in the non-photosensitive group. Furthermore, patients in the photosensitive group were more impacted by their skin disease in the areas of functioning, symptoms, and emotions than were patients in the non-photosensitive group. 

Importantly, even within the photosensitive group, it was possible to identify sub-groups that experienced differing degrees of impairments in quality of life (as indicated by skin disease effects on functioning, symptoms, and emotions) depending on their degree of photosensitivity. Participants with higher photosensitivity had greater impairments in quality of life (as indicated by skin disease effects on functioning, symptoms, and emotions) than did participants with lower photosensitivity. 

What were the limitations of the study?

The participants included in this study were visiting a referral-only center, which may have increased the possibility that they had more severe skin disease than those who may have been seeing a general dermatologist. Also, this study could not determine a causal relationship between photosensitivity and skin disease or quality of life. 

What do the results means for you?

The results indicate that clinical interview questions can identify CLE patients with photosensitivity. Photosensitivity is common in CLE patients, who may experience impaired quality of life in terms of daily functioning, symptoms, and emotions – even independently of CLE disease activity. Compliance with recommendations to avoid UV light exposure continues to be warranted given the association with exacerbation of skin disease and other lupus clinical manifestations.

Prevalence of self-report photosensitivity in cutaneous lupus erythematosus.
Foering K, Goreshi R, Klein R, Okawa J, Rose M, Cucchiara A, Werth VP. (2011). 
J. Am. Acad. Dermatol. 2011 Jul 8.
Epub ahead of print 2011 July 11.