These results indicate that patients with cutaneous lupus erythematosus have very poor quality of life, particularly with respect to emotions, photosensitivity, and hair loss. When compared to a number of other skin diseases, patients with cutaneous lupus erythematosus are amongst the most severely affected by their disease. With respect to common medical conditions, the psychological aspects of quality of life in cutaneous lupus erythematosus are similar to or worse than those in chronic hypertension, congestive heart failure, type 2 diabetes, and a recent myocardial infarction.
Female gender was strongly associated with poor quality of life in lupus, which is consistent with reports in the literature showing increased psychiatric comorbidity and worse quality of life in women with acne, pemphigus, cutaneous lymphoma, vitiligo, psoriasis, and chronic urticaria 7, 25-30
. Increased disease severity was also correlated with poor quality of life in lupus, as has been demonstrated in acne, psoriasis, cutaneous lymphoma, and vitiligo 7, 25-28
. 7, 9-11, 26, 27, 29
. The impaired functioning seen in generalized disease is not surprising, given the increased burden of disease in these patients compared to those with localized disease only.
Reports in the literature with respect to an association between distribution of lesions and psychiatric comorbidity are conflicting8-11
. In this study, there was a clear connection between facial lesions and impaired quality of life, which is understandable given the conspicuous nature of such lesions. Inflammatory alopecia was correlated with higher symptoms and lupus-specific scores; this likely reflects the itch associated with inflammatory alopecia and the patients' fear of losing more hair. This finding is consistent with previous reports demonstrating worse quality of life in lupus patients with alopecia compared to those without alopecia31, 32
. Unlike previous reports indicating no connection between psychiatric disease and current age or duration of disease7, 10, 11, 31
, our results suggest a small correlation between poor quality of life and younger age.
We hypothesized that the patient's skin score would better reflect quality of life because it indicates the patient's subjective perception of his disease, which does not necessarily mirror objective disease severity. However, these results indicate that the physician's skin score correlates equally well with quality of life. This, together with the correlation between quality of life and CLASI scores, indicates that the physician can recognize patients at risk for impaired quality of life based on assessments of disease severity.
Addressing quality of life issues is critical when treating patients with skin disease. The high prevalence of depression and anxiety in the dermatologic population may be in part due to poor quality of life, which is strongly linked to psychiatric comorbidity. In fact, quality of life predicts psychiatric well-being better than clinical severity, the end-point most physicians use when treating patients 7, 33
. Moreover, there is a high rate of suicidal ideation amongst dermatology patients, particularly those with high Skindex scores, ranging from 5.6-8.6%, compared to only 2.4-3.3% seen in the general medical population 34, 35
. Psychiatric disease in turn is associated with poor compliance and increased perception of symptoms33, 36, 37
. Thus better recognition of this problem may help alleviate both the mental and physical burdens of the disease.
Unfortunately, dermatologists do a poor job of identifying psychiatric disease in their patients (detection sensitivity 33%)38
. Therefore, when examining a patient who is at high risk for poor quality of life, it would be reasonable to screen for psychiatric distress and suicidal ideation. Those with mild impairments should be encouraged to discuss their concerns at clinic visits or in a support-group setting. Many find it reassuring to have their feelings validated and to learn that others with cutaneous lupus have similar concerns. Those with more severe impairments resulting in psychiatric disease and suicidal ideation should be referred to psychiatry as needed. For all patients, it may not be sufficient to simply treat according to disease severity; patients with seriously impaired quality of life may benefit from a change in therapy even if their skin disease is relatively mild.
Of note, all of the subjects included in this study are patients treated at the connective-tissue disease clinic at the Hospital of the University of Pennsylvania, which is a referral-only center. As such, these patients may have more severe or refractory disease than those in the general cutaneous lupus erythematosus population, who are managed by general dermatologists. Moreover, high Skindex-29 scores were considered predictive of psychiatric comorbidity, however subjects were not formally screened for psychiatric disease with questionnaires like the GHQ-12. In addition, the cross-sectional nature of this study made it difficult to ascertain cause-and-effect in understanding the deterioration of quality of life. An earlier study done by some members of our group demonstrated a weak correlation between changes in disease severity, as measured by the CLASI, and changes in quality of life, as measured by the Skindex-2939
. However, this study was limited by the small sample size (N=8). Therefore, larger studies must be done to elucidate how quality of life changes over time and whether or not it improves with treatment.
In conclusion, this study indicates that patients with cutaneous lupus erythematosus suffer from poor quality of life, which profoundly impacts their overall health and sense of well-being. As such, it is an issue that should be acknowledged and managed.