Background Evidence suggests that systemic lupus erythematosus (SLE) has a negative impact on many areas of patients' health-related quality of life (HRQL), including emotional well-being, the effects of treatment and social interactions.
Objectives The aim of this study was to qualitatively explore the impact of SLE on the lives of patients and develop a conceptual model to illustrate these impacts and their potential inter-relationships.
Methods Twenty-two SLE patients (defined as meeting four of the 11 ACR criteria) were recruited for this study. A semi-structured interview guide was developed following a review of the literature. Semi-structured, in-person interviews were conducted with each patient, exploring the symptoms experienced and the impact of symptoms and disease on the patient's life. Thematic analysis of interview transcripts was conducted in ATLAS.ti software to identify areas of impact and explore the interrelationships between concepts to inform the development of a conceptual model. Saturation, the point at which no new concepts are emerging from the data, was monitored using saturation tables.
Results Almost all participants were female (95%); the sample was diverse in terms of age (mean age of 45.5 years; age range of 20–60 years), ethnicity (59% black/African American) and disease duration. Commonly reported symptoms were pain, fatigue/tiredness and skin problems. Qualitative analysis revealed seven themes relating to the impact of SLE symptoms on patient's Health Related Quality of Life (HRQL): emotions, social, family and leisure activities, daily activities, cognition, appearance, employment activities and independence. The interrelationships between symptoms, impacts and symptom triggers are illustrated in a conceptual model.
Conclusions The conceptual model illustrates the wide reaching impact of SLE symptoms on a patient's HRQL, and thus the breadth of the potential value of treatments that improve SLE symptoms.
Disclosure of Interest None declared
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