Sutcliffe, Nurhan; (2001) Aspects of outcome in patients with systemic lupus erythematosus and Sjogren's syndrome. Doctoral thesis (M.D), UCL (University College London).

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Abstract

Objectives: 1. To determine the impact of SLE on the patient and society and to describe the influence of sociodemographic, socioeconomic, psychosocial and disease related factors on outcomes. 2. To measure outcome in patients with SS and compare this with SLE patients. 3. To identify predictors of lymphoma development in patients with SS. Methods: Study 1 was a cross sectional survey. The impact of SLE on the patient was determined by health status, disease activity, and end organ damage. The impact on society was measured by direct and indirect costs of care. Study 2 was a cross sectional study of patients with primary SS (pSS). Outcomes were determined by health status and end organ damage. Study 3 investigated the clinical, laboratory and immunogenetic markers of lymphoma development in a cohort of patients with pSS. Results: Study I 195 patients were studied. SLE patients had a poorer quality of life than a healthy population with higher disease activity, more end organ damage, reduced social support, and less satisfaction with medical care associated with worse health status. End organ damage was greater in non-caucasian patients and those with longer disease duration, lower educational level and higher disease activity. Satisfaction with care also influenced organ damage. Very long disease duration was associated with higher disease activity. Costs of care were identified in 107 SLE patients. Mean annual total costs were £7913 per patient. Indirect costs were twice the direct costs. More educated patients, patients with less physical health and higher disease activity incurred higher direct, indirect and total costs. Younger patients and patients with greater organ damage also incurred higher direct costs. Study 2: 37 patients with pSS were studied and compared to 120 SLE patients and 21 patients with SLE and SS. Patients with pSS had functional disability similar to SLE patients. Organ damage was uncommon in pSS patients with the exception of oral damage. Study 3; Of 72 patients with pSS retrospectively studied, five developed MALT lymphomas. The risk factors were swollen glands, lymphadenopathy and leg ulcers. Conclusion: SLE has a considerable impact on the patient and society in general. Psychosocial, socioeconomic, sociodemographic and disease related factors contribute to outcome. SS also has considerable impact on patients' lives in some respects comparable to SLE. Certain clinical features predict lymphoma development, a potentially fatal outcome, in patients with pSS.

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