Understanding the disease burden and unmet needs among patients with cutaneous lupus erythematosus: A qualitative study

Abstract

BackgroundCutaneous lupus erythematosus (CLE) is a rare dermatologic autoimmune disease marked by photosensitive lesions that can vary in appearance depending on the subtype. The extent to which CLE affects a patient’s quality of life (QoL) has not been fully characterized. Focus groups were conducted to explore patients’ perspectives of how CLE has affected their lives and to understand the unmet needs in regards to CLE treatment and care.MethodsThis qualitative study involved three focus groups with a total of 19 patients with CLE. A moderator guide containing open-ended questions was used to assess how CLE affects overall QoL. The focus groups were audio-recorded with notetaking. Data were content-analyzed to identify emergent themes.ResultsFour themes emerged as important to patients with CLE: disease sequelae, social interactions, functioning, and unmet needs. Most patients reported decreased QoL due to signs and symptoms such as dyspigmentation and scarring. Having CLE negatively affected patients’ mental health and personal relationships and led to negative coping strategies, such as recreational drug use. Issues related to body image were also elicited by patients. Patients cited unmet needs including lack of treatments to improve chronic skin lesions of CLE and inadequate patient education on living with CLE.ConclusionsProviders can look for signs of QoL impairment in patients with CLE by asking questions related to body image, mental health, social isolation, and coping mechanisms. Future QoL measures can include the effect of CLE-specific attributes such as scarring and dyspigmentation to empower patients’ voices in determining therapeutic efficacy in future clinical trials. Findings from our study have added a new understanding of daily experiences that were elicited directly from patients with CLE.

Selective Janus Kinase 1 Inhibition Is a Promising Therapeutic Approach for Lupus Erythematosus Skin Lesions

“…This vicious circle can result in a strong burden for quality of life (14,15). Following current guidelines corticosteroids and antimalarials are established as first-line treatment of CLE.…”

Validation and reliability of a disease‐specific quality‐of‐life measure in patients with cutaneous lupus erythematosus

“…The first three factors – functioning (12 items), emotions (10 items) and symptoms (seven items) – were in accordance with the Skindex . The additional two domains correspond to body image/cosmetic issues (four items) and photosensitivity (three items), which are CLE‐specific attributes that have been reported to be important to patients in qualitative and cross‐sectional studies . The CLEQoL was observed to exhibit acceptable convergent validity when compared with the generic QoL scale, the SF‐36.…”

“…2,3,7,14,16 The additional two domains correspond to body image/cosmetic issues (four items) and photosensitivity (three items), which are CLE-specific attributes that have been reported to be important to patients in qualitative and cross-sectional studies. 2,3,14,17 The CLEQoL was observed to exhibit acceptable convergent validity when compared with the generic QoL scale, the SF-36. The medium-to-strong significant correlations between the majority of the items in the CLEQoL and the corresponding SF-36 domains indicated acceptable convergent validity.…”

“…For example, the Skindex-29, 12 a commonly used QoL questionnaire for skin diseases, [1][2][3]7,[14][15][16] lacks questions addressing concerns unique to patients with CLE such as avoidance of sun exposure. As a result, the 'cutaneous lupus erythematosus quality of life' (CLE-QoL) was developed to include additional CLE-specific domains like body image and photosensitivity, thanks to input from patients with CLE via focus groups, 17 VitiQol, 18 and the Skindex-29+3, which contains three additional CLE-specific questions on photosensitivity and alopecia. 2,3,14 Regardless of whether a PRO measure is generic or diseasespecific, it must demonstrate satisfactory psychometric properties, including reliability, responsiveness to changes (sensitivity) and validity in the measured domain.…”

Understanding cutaneous lupus erythematosus: a step forward

“…Mortality and conventional disability are not helpful outcomes for most skin disease, but skin disease changes life profoundly. In preparation for this QoL tool the authors have done solid and extensive work, which captures this impact . The paper is a sobering read.…”