Capturing Health-Related Quality of Life in Patients with Cutaneous Lupus Erythematosus
Cutaneous lupus erythematosus (CLE) severely impacts quality-of-life (HRQoL) for patients due to the hyperpigmentation changes, scarring and hair loss caused by this chronic, dermatological, autoimmune disease. Because health perceptions of patients can differ significantly from those of clinicians, subjective measures, such as patient-reported outcomes (PROs) may be more appropriate to gather HRQoL data in patients with CLE.
A recent systematic review examined published PRO instruments that are used to measure HRQoL in patients with CLE. The study had three aims: to identify currently available PRO instruments; examine the development, content and psychometric properties of these instruments in patients with CLE and patients with other skin diseases; and to examine the disease burden on overall HRQoL in patients with CLE. The authors note that the PRO instruments that they identified evaluated symptoms and HRQoL generically for skin diseases and were not developed with patients for CLE specifically. The most frequently used PRO was the Skindex, followed by the Dermatology Life Quality Index (DLQI).
The Skindex focuses on three domains – symptoms, emotions and functioning. While it was not developed specifically for CLE, the authors identified eight studies that used Skindex to measure HRQoL in patients with CLE. Three studies added questions to address CLE-specific concerns. The DQLI scale was designed to measure the HRQoL of dermatology patients (e.g. those with acne, psoriasis and dermatitis) and to be used as an outcome measure in health services research.
The studies in the review were able to discern some particular findings that depict the HRQoL burden in patients with CLE. Patients with CLE reported lower quality of life than in patients with systemic lupus erythematosus, and worse than or similar to other common dermatological (e.g. acne, nonmelanoma skin cancer) and medical conditions (e.g. hypertension, diabetes, recent myocardial infarction). The studies were also able to determine that as patients with CLE progress from acute lesions to chronic lesions, their HRQoL also decreases. The authors conclude that the current PRO instruments may not be capturing all the domains important in these patients. They note that future qualitative studies are needed to significantly improve the understanding of disease burden and CLE-specific measures are needed.
Byline: Martha L. Sikes, MS, RPh, PA-C
Posted: March 13, 2017
Source: Wiley Online Library
Adapted from the original article.
[Image: DermNet New Zealand]