Quality of life in patients with antiphospholipid antibodies differs according to antiphospholipid syndrome damage index (DIAPS)

Background Consequences of organ damage in primary antiphospholipid syndrome (PAPS) are diverse, our aim was to determine organ damage over time and the correlation of organ damage accrual with health-related quality of life (HRQoL) in PAPS. Methods First phase: retrospective cohort applying Damage Index for Antiphospholipid Syndrome (DIAPS) at 1, 5, 10, 20 years, or longer since diagnosis. Second phase: cross-sectional study, assessing HRQoL by the Medical Outcomes Study Short Form 36 (SF-36), and organ damage accrual. Descriptive statistics and Spearman correlation coefficient were used. Results Sixty-seven patients were included, mean follow-up:15 years. Deep vein thrombosis prevailed (71.6%), pulmonary embolism (35.8%) and stroke (32.8%). Organ damage was found in 98.5%, with a cumulative DIAPS value of 3, with greater involvement in the neuropsychiatric and peripheral vascular domains. Regarding HRQoL, deterioration in the physical component summary (PCS) was found in 89.6%. Organ damage accrual correlated inversely and significantly with all the SF-36 domains, mainly with the total score and PCS. Body pain and PCS correlated the most (rho = −0.503, rho = −0.475). Conclusions Organ damage accrual impaired HRQoL in PAPS. Secondary thromboprophylxis through adequate systemic management and control of cardiovascular risk factors are necessary to prevent further impairment.

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Assessment of Quality of Life (QoL) in Systemic Lupus Erythematosus Patients at a Tertiary Care Hospital in Egypt

Current Rheumatology Reviews ◽

10.2174/1573397115666190118144903 ◽

2019 ◽

Vol 15 (4) ◽

pp. 304-311

Author(s):

Mervat E. Behiry ◽

Sahar A. Ahmed ◽

Eman H. Elsebaie

Keyword(s):

Quality Of Life ◽

Systemic Lupus Erythematosus ◽

Disease Activity ◽

Lupus Erythematosus ◽

Tertiary Care ◽

Damage Index ◽

Life Questionnaire ◽

Care Hospital ◽

Systemic Lupus

: Systemic Lupus Erythematosus (SLE) has a profound impact on quality of life. Objective: The objective of this study was to explore the quality of life among Egyptian SLE patients and to assess its relationships with demographic and clinical features. Methods: One hundred sixty-four SLE patients were recruited for this study. Demographic information; clinical parameters; disease activity, as evaluated by the systemic lupus erythematosus Disease Activity Index; and organ damage, as assessed by the systemic lupus international Collaborative Clinics/American College of Rheumatology Damage Index, were reported. Quality of life was assessed with a quality of life questionnaire specifically designed for patients with systemic lupus erythematosus; the questions are grouped in the following six domains: physical function, sociooccupational activities, symptoms, treatment, mood, and self-image. Higher values indicate poorer quality of life. Conclusion: Poor quality of life among Egyptian SLE patients and disease activity are strongly related to impaired lifestyles in these patients.

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SAT0232 PERCEPTION OF THE DISEASE IN PATIENTS WITH EARLY SYSTEMIC LUPUS ERYTHEMATOSUS

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2020-eular.5406 ◽

2020 ◽

Vol 79 (Suppl 1) ◽

pp. 1059.3-1059

Author(s):

M. Garabajiu ◽

L. Mazur-Nicorici ◽

T. Rotaru ◽

V. Salaru ◽

S. B. Victoria ◽

...

Keyword(s):

Quality Of Life ◽

Systemic Lupus Erythematosus ◽

Disease Activity ◽

Lupus Erythematosus ◽

Disease Duration ◽

Activity Index ◽

Damage Index ◽

Organ Damage ◽

Systemic Lupus

Background:Systemic lupus erythematosus is an autoimmune disease with a major impact on patient’s quality of life.Objectives:To evaluate patient’s attitude toward early disease and factors that influence it.Methods:Performed case-control study included SLE patients that fulfilled SLICC, 2012 classification criteria. The research included two groups of patients: early SLE – 1stgroup (disease duration ≤24 months) and non-early SLE – 2ndgroup control (disease duration >24 months). The pattern of the disease activity was assessed by patient global assessment (PGA), Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) and Systemic Lupus Activity Measure (SLAM), for SLE activity, SLICC/ACR Damage Index (DI) for disease irreversible changes and SF-8 for the Quality of Life (QoL).Results:A total of 101 SLE patients with 34 in the 1stgroup (early SLE) and 67 in the 2ndgroup (non-early SLE) was analyzed. The disease activity showed high disease activity in both groups by SLEDAI (7,02±4,16 and 6,26±4,43 points, p>0,05) and SLAM (7,47±4,40 and 7,31±4,10 points, p>0,05) such as (46,97±19,39 vs 47,98±22,41 points). The QoL was appreciated as low, by both components (mental and physical), in groups. The damage index was higher in the 2nd group (0,23±0,43 and 1,07±1,29, p<0,001), which can be explained by the development of irreversible changes with the increase of disease duration.The PGA in early SLE was influenced by subjective symptoms contained in SLAM index (r=0,48, p<0,05), such as fatigue and depression, and the level of the quality of life (r=0,65, p<0,001). Meantime, PGA in patients with longer disease duration (>2 years), was influenced by the presence of organ damage by SLICC/ACR DI (0,23, p<0,05) and objective findings of the disease activity contained in SLEDAI (r=0,33, p<0,005) and SLAM (0,44, p<0,001).Conclusion:The disease recognition in patients with early SLE was determined by subjective and psycho-emotional signs, while in patients with longer disease duration it was influenced by organ damage and complications.References:no referencesDisclosure of Interests:None declared

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Validation of an Argentine version of Lupus Quality of Life questionnaire

Lupus ◽

10.1177/0961203316660202 ◽

2016 ◽

Vol 25 (14) ◽

pp. 1615-1622 ◽

Cited By ~ 4

Author(s):

M A Machado Escobar ◽

M S Yacuzzi ◽

R N Martinez ◽

L González Lucero ◽

V I Bellomio ◽

...

Keyword(s):

Quality Of Life ◽

Lupus Erythematosus ◽

Convergent Validity ◽

Damage Index ◽

Life Questionnaire ◽

Systemic Lupus ◽

Quality Of Life Questionnaire ◽

American College Of Rheumatology ◽

Euroqol 5D

Objective To determine reproducibility and validity of an Argentine version of the Lupus Quality of Life questionnaire (LupusQoL) and to determine cut-off values in the questionnaire. Materials and methods One hundred and forty-seven systemic lupus erythematosus patients (American College of Rheumatology 1982/1997) were assessed from April 2014 to July 2014. Demographic and socioeconomic variables were collected, as well as SELENA/SLEDAI, Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index Score, comorbidities and treatment data. Patients completed LupusQoL-Argentine version and European Quality of Life Questionnaire (EuroQoL-5D). Internal consistency and reliability were examined. Convergent validity with EuroQoL-5D was assessed through analysis of latent classes, which established homogeneous categories from the responses of each domain of LupusQoL and for the total. Results Out of 147 patients, 93.2% were female, mean age 36.4 ± 11.1 years, mean disease duration 2.7 ± 9 years, mean SELENA/SLEDAI 2.7 ± 3 points. The cut-off point that defined good or bad quality of life was 0.739 for EuroQoL 5D and 63 for LupusQoL. Cut-off values for each LupusQoL domain were also defined, creating two classes in each of them. There was moderate to high concordance to classify quality of life (Kappa = 0.74, 95% confidence interval = 0.54, 0.95). Conclusion The Argentine version of LupusQoL is a valid, reliable and reproducible instrument to assess quality of life. In this study, cut-off points that allow the classification of patients regarding whether they have good or bad quality of life are established for the first time.

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Damage index assessment and quality of life in systemic lupus erythematosus patients (with long-term disease) in Northeastern Brazil

Clinical Rheumatology ◽

10.1007/s10067-006-0517-6 ◽

2007 ◽

Vol 26 (3) ◽

pp. 423-428 ◽

Cited By ~ 20

Author(s):

Eutília A. M. Freire ◽

Inês O. Maia ◽

Jamile C. A. Nepomuceno ◽

Rozana M. Ciconelli

Keyword(s):

Quality Of Life ◽

Systemic Lupus Erythematosus ◽

Lupus Erythematosus ◽

Damage Index ◽

Northeastern Brazil ◽

Systemic Lupus

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Quality of Life and Disability in Patients with Treatment-Failure Gout

The Journal of Rheumatology ◽

10.3899/jrheum.071229 ◽

2009 ◽

Vol 36 (5) ◽

pp. 1041-1048 ◽

Cited By ~ 108

Author(s):

MICHAEL A. BECKER ◽

H. RALPH SCHUMACHER ◽

KATY L. BENJAMIN ◽

PETER GOREVIC ◽

MARIA GREENWALD ◽

...

Keyword(s):

Quality Of Life ◽

Treatment Failure ◽

Patient Reported Outcomes ◽

Short Form ◽

Clinical Status ◽

Damage Index ◽

Sf 36 ◽

Patient Reported ◽

Gout Flares

Objective.The relationship between self-reported quality of life and disability and disease severity was evaluated in subjects with treatment-failure gout (n = 110) in a prospective, 52-week, observational study.Methods.Subjects had symptomatic crystal-proven gout of at least 2 years’ duration and intolerance or refractoriness to conventional urate-lowering therapy. Serum uric acid (sUA) concentration, swollen and tender joint counts, frequency and severity of gout flares, tophus assessments, comorbidities, and patient-reported outcomes data [Medical Outcomes Study Short Form-36 (SF-36), Health Assessment Questionnaire-Damage Index] were collected. Analyses included correlations of patient-reported outcomes with clinical variables and changes in clinical status.Results.Mean age of study subjects was 59 years. Mean scores on SF-36 physical functioning subscales were 34.2–46.8, analogous to persons aged ≥ 75 years in the general population. Subjects with more severe gout at baseline had worse health-related quality of life (HRQOL) in all areas (p < 0.02 for all measures), compared to patients with mild-moderate disease. Number of flares reported in past year, number of tender joints, swollen joints, and tophi correlated significantly with some or all HRQOL and disability measures. sUA was not significantly correlated with any HRQOL or disability measure. Subjects with comorbidities experienced worse physical, but not mental, functioning.Conclusion.Severe gout is associated with poor HRQOL and disability, especially for patients who experience more gout flares and have a greater number of involved joints. Subject perceptions of gout-related functioning and pain severity appear to be highly sensitive indicators of HRQOL and disability.

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16th International congress on antiphospholipid antibodies task force report on clinical manifestations of antiphospholipid syndrome

Lupus ◽

10.1177/09612033211020361 ◽

2021 ◽

pp. 096120332110203

Author(s):

Savino Sciascia ◽

Massimo Radin ◽

Irene Cecchi ◽

Roger A Levy ◽

Doruk Erkan

Keyword(s):

Risk Stratification ◽

Antiphospholipid Syndrome ◽

Antiphospholipid Antibodies ◽

Task Force ◽

Current Knowledge ◽

Clinical Manifestations ◽

International Congress ◽

Level Of Evidence ◽

Task Force Report

The objectives of the 16th International Congress on Antiphospholipid Antibodies (aPL) Task Force on Clinical Manifestations of Antiphospholipid Syndrome (APS) were to critically analyze: a) the definition of “APS”; b) the current knowledge on non-traditional manifestations associated with aPL; and c) the risk stratification strategies in aPL-positive patients. The quality of evidence was assessed by the GRADE system. The task force concluded that: a) APS does not have a uniform definition given the heterogeneity of the clinical presentations and different aPL profiles; b) current literature supports the role for aPL testing in cases of thrombocytopenia and recurrent cardiac events but are limited by vast heterogeneity, providing an overall low-to-very low level of evidence; and c) risk stratification strategies in aPL-positive patients, such as aPL-Score and Global APS Score, can be useful in clinical practice. International multicenter studies are still highly needed to improve the quality of available evidence and consequently the strength of future recommendations.

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