Two aspects of the clinical and humanistic burden of systemic lupus erythematosus: Mortality risk and quality of life early in the course of disease

Campbell, Robert A. A.; Cooper, Glinda S.; Gilkeson, Gary S.

doi:10.1002/art.23539

Cited by 60 publications

(43 citation statements)

References 22 publications

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“…The disease affects many aspects of patient's life (7). Patients perceive disturbance in the area of job performance, career building (68%) and social activities (63%) as the most significant, leading to social isolation and frustration resulting from inability to perform activities of daily living that used to be common prior to the disease.…”

Section: Discussionmentioning

confidence: 99%

Systemic Lupus Erythematosus - Disease Impact on Patients

Macejová¹,

M²,

Oetterová³

2013

Cent Eur J Public Health

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SUMMARYAim: Systemic lupus erythematosus (SLE) is an inflammatory autoimmune disease that can affect almost all organs of the body. Lupus is a non-curable disease and the treatment is based on symptom control by immunosuppressive and anti-inflammatory treatment. The disease itself as well as treatment-related adverse events have a significant negative impact on life expectancy and quality of life of patients. The aim of this study was to identify the impact of the disease on life of SLE patients.Methods: Data were collected anonymously using a special questionnaire. The survey involved 76 patients with SLE, results were processed by conventional methods and descriptive statistic methods.Results: The survey has confirmed the impact of SLE on professional activities i.e. up to 63% of patients are registered disabled, of which 46% are granted full disability pension. SLE negatively affects patients' career -up to 39% of SLE patients stated that they had to change a job due to their disease. SLE has a strong impact on everyday life of patients. SLE symptoms are significant even during the period of quiescence -predominantly fatigue, reduced physical activity, pain. The most influenced activities of daily living included sunbathing and more strenuous activities or sport. The fact that limitations in all monitored activities are present in more than 50% of patients is a serious finding. Treatment-related adverse events have negative impact on the quality of life in almost 70% of patients. The most frequent events include gastrointestinal symptoms, visual disturbance and osteoporosis.Conclusion: SLE has a significant impact on the quality of life of patients and hinders them from leading everyday life at the level comparable to healthy population.

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Section: Discussionmentioning

confidence: 99%

Systemic Lupus Erythematosus - Disease Impact on Patients

Macejová¹,

M²,

Oetterová³

2013

Cent Eur J Public Health

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“…The SF-36 is a valid and reliable tool that captures the physical, psychological, and social impact of chronic diseases such as SLE (2)(3)(4). Health-related QOL of patients with SLE was significantly worse and affected all health domains at an earlier age in comparison to patients with some other common chronic diseases (5,6).…”

Section: Introductionmentioning

confidence: 99%

Changes in Quality of Life in the First 5 Years of Disease in a Multicenter Cohort of Patients With Systemic Lupus Erythematosus

Urowitz

Gladman

Ibañez

et al. 2014

Arthritis Care & Research

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Objective. The Medical Outcomes Study Short Form 36 (SF-36) is recommended to assess quality of life (QOL) in systemic lupus erythematosus (SLE).The aim of the current study was to assess QOL over time in the first 5 years of a multicenter inception cohort of patients with SLE.Methods. An inception SLE cohort was assembled according to a standardized protocol between 2000 and 2012. In addition to clinical and laboratory assessments, patients completed the SF-36 at yearly intervals. Only patients who had >5 completed QOL questionnaires were included in these analyses. Generalized estimating equation models were run separately for each of the 8 subscales and for the physical and mental component summary scores, adjusting for repeated measures by patients. Results. A total of 495 patients were included. The mean ؎ SD disease duration at the first visit was 5.3 ؎ 4.1 months. The mean ؎ SD age at enrollment was 35.8 ؎ 13.2 years. All 8 subscales and the 2 summary scores showed improvement in the first 2 years from enrollment. Between years 2 and 5, none of the subscales or summary scores showed any change. Minimum clinically important improvement was achieved by 35-56% of the patients and was influenced by demographic and disease factors. Conclusion. Unlike late-stage lupus, where QOL is stable over time, in patients with early disease, all subscales improve in early followup up to 2 years. Therefore, the SF-36 may be a sensitive outcome measure in early disease in patients with SLE.

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“…SLE is heterogeneous in manifestations and carries a significant mortality risk (1,2,6,8 -10). Organ system pathologies associated with the condition, particularly pulmonary, cardiovascular, and renal involvement, are well-established prognostic indicators for accelerated morbidity (2,6,8,9). Although American College of Rheumatology (ACR) disease activity indices and biomarkers assist with SLE diagnosis and treatment, there continues to be debate about clinical subtypes (6,7,11).…”

Section: Introductionmentioning

confidence: 99%

Impact of systemic lupus erythematosus on health, family, and work: The patient perspective

Robinson¹,

Aguilar²,

Schoenwetter³

et al. 2010

Arthritis Care & Research

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Objective. Qualitative research among patients with systemic lupus erythematosus (SLE) can identify aspects of the disease relevant to clinical research and practice. A phenomenological, mixed-method approach was used to investigate these disease-driven health issues. Methods. A convenience sample of patients with SLE from Los Angeles County, California was recruited from a private, community-based rheumatology practice for participation in focus groups and interviews. Semistructured discussions explored disease manifestations and impact. A self-administered questionnaire evaluated the occurrence and importance of disease issues previously identified from literature. Patient health issues were identified through convergence using 1) qualitative analysis of focus group transcripts and 2) quantitative analysis of the questionnaire. Patients were also asked about their ability to accurately recall disease experiences. Results. Focus group participants (n ‫؍‬ 23) had a mean age of 43 years and a mean disease duration of 8 years; 19 (83%)were women and 14 (61%) were white. The most frequent health issues identified by focus group transcript analysis were pain (83%), fatigue (61%), work or school impairment (48%), skin manifestations (43%), and skin sensitivity (43%). Questionnaire findings were similar: the most frequent health issues were inability to do previous activities (87%), fatigue (87%), pain (87%), and work or school impairment (83%). Most interviewed patients (7 of 10) reported an ability to accurately recall disease issues between 24 hours and 7 days. Conclusion. SLE patients reported signs and symptoms that could significantly impact their functioning in daily life. Treatments that substantially improve these disease manifestations would offer considerable benefit to patients, treating physicians, and general society.

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Two aspects of the clinical and humanistic burden of systemic lupus erythematosus: Mortality risk and quality of life early in the course of disease

Cited by 60 publications

References 22 publications

Systemic Lupus Erythematosus - Disease Impact on Patients

Systemic Lupus Erythematosus - Disease Impact on Patients

Changes in Quality of Life in the First 5 Years of Disease in a Multicenter Cohort of Patients With Systemic Lupus Erythematosus

Impact of systemic lupus erythematosus on health, family, and work: The patient perspective

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