Using the revised Wilson and Cleary model to explore factors affecting quality of life (QoL) in patients with cutaneous lupus erythematosus (CLE)
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Cutaneous lupus erythematosus (CLE) is a potentially disfiguring, chronic autoimmune disease with extremely variable skin manifestations, negatively impacting quality of life (QoL) of patients. This two-phase dissertation assessed factors associated with QoL in CLE patients, which may be used in specific interventions in improving QoL in this patient population. Phase one entailed three focus groups (FGs) to capture the disease burden and QoL in patients with CLE (n=19). Four themes emerging as important factors: disease sequelae, social interactions, coping strategies, and unmet needs. Having CLE negatively affected mental health, and personal relationships, and led to negative coping strategies such as recreational drug use. Patients cited unmet needs including lack of treatments that improve chronic skin lesions and inadequate patient education on living with CLE. Phase two was a cross-sectional survey in 57 patients to assess QoL and its correlates, using constructs within the Revised Wilson and Cleary Model. The dependent variables were operationalized as: a CLE-specific QoL measure, CLEQoL (CLEQoL-mental and CLEQoL physical) and the SF-36 (mental component summary (MCS) and physical component summary (PCS)), yielding four separate regression models. ...These findings suggest that several modifiable (e.g., pain, pruritus, fatigue, body image, and social support) and non-modifiable (e.g., race/ethnicity) factors were predictive of overall QoL in CLE patients and could be used to help health care providers interpret and assess QoL outcomes in CLE patients. These studies underscore several of the issues affecting QoL in CLE patients. Through the use of a theoretical framework, patient-centered and clinical outcomes were integrated to facilitate a fuller understanding of the several factors impacting QoL in CLE patients. As such, future studies aimed at understanding QoL in CLE patients could incorporate a multi-phase, multi-method approach using a theoretical framework.