scholarly journals FRI0174 THE LONGER THE DELAY IN DIAGNOSIS, THE WORSE THE OUTCOME IN SLE – CROSS SECTIONAL ANALYSIS OF A GERMAN LONG-TERM STUDY (LULA COHORT)

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 671.1-671
Author(s):  
A. Kernder ◽  
J. Richter ◽  
R. Fischer-Betz ◽  
B. Winkler-Rohlfing ◽  
M. Aringer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Organ Involvement ◽  
Health Related Quality ◽  
Research Support ◽  
Long Term Outcome ◽  
Related Quality ◽  
Health Related

Background:Patients with systemic lupus erythematosus (SLE), even compared to those with other rheumatic diseases, are thought to often experience a long delay from the onset of symptoms to diagnosis.Objectives:Our aim was to study the association of this delay to the long-term outcome of the disease.Methods:Information on demographics, onset of first symptoms, first physicians visit, time of diagnosis and organ involvement was assessed by self-reported questionnaires among SLE patients in Germany in 2011 (LuLa cohort, n=585). Disease related damage (Brief Index of Lupus Damage; BILD), disease activity (Systemic Lupus Activity Questionnaire; SLAQ) and health related quality of life (SF-12) were chosen as proxies for outcome. The association to the outcome of the disease was analyzed by linear regression analysis, adjusted for age, disease duration, organ involvement and sex.Results:In our cohort, the mean reported duration between the onset of symptoms and the diagnosis of SLE was 46 months (SD 73), which includes 13 months (SD 41) between the onset of symptoms and the first physicians visit. The participating patients were diagnosed between 1960 and 2004.Linear regression analysis revealed that longer time to diagnosis was associated with (i) higher disease activity (SLAQ, p<0.0001, β=0.199), (ii) higher disease-related damage (BILD, p=0.002, β=0.137) and (iii) lower health-related quality of life (SF-12 physical p=0.004, β=-0.136, SF-12 mental p=0.004, β=-0.143) in the year 2011. The organ involvement at the time of diagnosis did not alter these results.Conclusion:A delay in diagnosis was associated with a worse outcome in SLE (disease activity, disease-related damage and health-related quality of life). Therefore, an early diagnosis seems to be important to improve the long-term outcome of the disease. It will be interesting to see whether adopting the new EULAR/ACR 2019 classification criteria can contribute to a faster diagnosis and a better outcome in consequence.The LuLa study is supported by unrestricted grants from GlaxoSmithKline and UCB Pharma.Disclosure of Interests:Anna Kernder Grant/research support from: Grant/research support from: GlaxoSmithKline and UCB Pharma for performing the LuLa-study., Jutta Richter Grant/research support from: Grant/research support from: GlaxoSmithKline and UCB Pharma for performing the LuLa-study., Rebecca Fischer-Betz Consultant of: UCB, Speakers bureau: Abbvie, Amgen, Biogen, BMS, Celgene, Chugai, GSK, Janssen, Lilly, Medac, MSD, Novartis, Roche, UCB, Pfizer., Borgi Winkler-Rohlfing: None declared, Martin Aringer Consultant of: Boehringer Ingelheim, Roche, Speakers bureau: Boehringer Ingelheim, Roche, Matthias Schneider Grant/research support from: GSK, UCB, Abbvie, Consultant of: Abbvie, Alexion, Astra Zeneca, BMS, Boehringer Ingelheim, Gilead, Lilly, Sanofi, UCB, Speakers bureau: Abbvie, Astra Zeneca, BMS, Chugai, GSK, Lilly, Pfizer, Sanofi, Gamal Chehab Grant/research support from: Grant/research support from: GlaxoSmithKline and UCB Pharma for performing the LuLa-study.

P197 LONG-TERM HEALTH-RELATED QUALITY OF LIFE AFTER BENIGN ESOPHAGEAL PERFORATION

2019 ◽  
Vol 32 (Supplement_2) ◽  
Author(s):  
Knepper Laura ◽  
Brinkmann Sebastian ◽  
F Fuchs Hans ◽  
H Hoelscher Arnulf ◽  
Kuhr Kathrin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Esophageal Perforation ◽  
Health Related Quality ◽  
Long Term Outcome ◽  
Related Quality ◽  
Long Term Follow Up ◽  
Health Related

Abstract Aim This study aims to evaluate long-term outcome and health related quality of life in patients with benign esophageal perforations. Background and Methods Esophageal perforation is associated with high morbidity and mortality. In addition to surgical treatment, endoscopic endoluminal stent placement and endoscopic vacuum therapy (EVT) are established methods in the management of this emergency condition. As health-related quality of life (HRQoL) is becoming a major issue in the evaluation of any therapeutic intervention not much is known about HRQoL, particular in the long-term follow-up of patients treated for benign esophageal perforation with different treatment strategies. Patients treated for benign esophageal perforation at the University Hospital Cologne from January 2003 to December 2014 were therefore investigated. Primary outcome and management of esophageal perforation were documented and long-term quality of life was assessed using the Gastrointestinal Quality of Life Index (GIQLI), the Health-Related Quality of Life Index (HRQL) for patients with gastroesophageal reflux disease (GERD) and the European Organization for Research and Treatment of Cancer (EORTC) questionnaires for general and esophageal cancer specific QoL (QLQ-C30 and QLQ-OES18). Results Patients were divided based on primary treatment into an endoscopic (46.5%), surgical (34.5%) and conservative treatment group (19%). Short- and long-term outcome, as well as quality of life were compared. HRQoL was measured after a median follow-up of 49 months. HRQoL was generally reduced in patients with benign esophageal perforation. Endoscopically treated patients showed the highest GIQLI overall score and highest EORTC general health status, followed by the conservative and the surgical group. Conclusion HRQoL in patients with benign esophageal perforation is reduced even in the long-term follow-up. Temporary stent or EVT is effective and provides a good alternative to surgery not only in the short-term but also in the long-term follow-up.

Long-term outcome and health-related quality of life after laparoscopic and open colectomy for benign disease

2003 ◽  
Vol 17 (9) ◽  
pp. 1404-1408 ◽  
Author(s):  
K. Thaler ◽  
A. Dinnewitzer ◽  
E. Mascha ◽  
S. Arrigain ◽  
E. G. Weiss ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Benign Disease ◽  
Open Colectomy ◽  
Health Related Quality ◽  
Term Outcome ◽  
Long Term Outcome ◽  
Related Quality ◽  
Health Related

scholarly journals FRI0592 IMPACT OF INDIVIDUAL SYMPTOMS OF PSORIATIC ARTHRITIS ON PHYSICAL COMPONENT SCORE AND MENTAL COMPONENT SCORE OF SF-36 AS A MEASURE OF HEALTH RELATED QUALITY OF LIFE (QOL): AN OBSERVATIONAL COHORT STUDY

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 901.1-902
Author(s):  
M. Skougaard ◽  
T. Schjødt Jørgensen ◽  
M. J. Jensen ◽  
C. Ballegaard ◽  
J. Guldberg-Møller ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psoriatic Arthritis ◽  
Disease Activity ◽  
Advisory Board ◽  
Health Related Quality ◽  
Research Support ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related

Background:Patients with Psoriatic Arthritis (PsA) experience diverse symptoms including skin and nail psoriasis, swollen and tender joints, enthesitis, and fatigue that have shown to impair health related quality of life (QoL). We hypothesized that different elements of disease influence SF-36 physical (PCS) and mental (MCS) component summary scores differently.Objectives:The objective of the study was to assess the interaction between change in disease activity (DAS28CRP), PsA symptoms (psoriasis [PsO], nail PsO, enthesitis, fatigue, pain, and physical function) with changes in PCS and MCS scores in a PsA patient cohort exploring effect of treatment on clinical manifestations and patient-reported outcome (PRO).Methods:Data were obtained from the PIPA cohort (1) at baseline and after 4 months of treatment. Patients’ characteristics were described as medians with interquartile ranges (IQRs) and numbers with percentages. Data were presented as changes between baseline and follow-up with delta (Δ) values on xyz-plots. Associations between PCS and MCS scores, DAS28CRP, and PsA symptoms were described with fitted linear regression plane models. PCS and MCS were derived from 8 domains of SF-36 and ranged from 0-100 with lower values reflecting more impaired QoL.Results:71 PsA patients were included in the study. 40 (56%) patients were female with a mean age of 50 (IQR 41-60) years and disease duration of 2.15 (IQR 0.2-9) years. Figure 1 shows associations between PsA symptoms, DAS28CRP, and PCS (green regression plane) and MCS (blue regression plane). For all PROs; pain, fatigue and physical function, improvements in both ΔPCS and Δ MCS scores were associated with improvements in either Δpain, ΔPsAID fatigue, and/or ΔHAQ, and to a larger extent than improvements in ΔDAS28CRP. Improvements in Δnail PsO (regression coefficient (RC): -0.22) and ΔPASI (RC: -0.31) positively impacts ΔMCS, without a clear association in PCS scores (RC: 0.13 and 0.38 for Δnail PsO and ΔPASI, respectively). Improvement in inflammatory features SPARCC enthesitis and DAS28CRP showed improvement in both ΔPCS and ΔMCS.Figure 1.Association between disease activity, individual symptoms and PCS/MCS PCS; physical component summary (green regression plane), MCS; mental component summary (blue regression plane). Arrows indicate the positive improvement vector. SF-36: short form-36, CI: Confidence Interval, DAS28CRP: disease activity score with 28 joints and c-reactive protein, PASI: Psoriasis Area Severity Index, SPARCC: Spondyloarthritis Research Consortium of Canada enthesitis index, VAS: visual analogue scale, PsAID: Psoriatic Arthritis Impact of Disease, HAQ: Health Assessment QuestionnaireConclusion:Pain and fatigue are well-known factors to impair QoL in PsA patient. Here we show that diminishing these factors, pain and fatigue, improved both PCS and MCS scores more than changes in DAS28CRP. Improvements in skin and nail manifestations impacted MCS scores and are as important as changes in joint manifestations which affect PCS and MCS scores equally.References:[1] Hojgaard P et al. Pain mechanisms and ultrasonic inflammatory activity as prognostic factors in patients with psoriatic arthritis (…) BMJ Open. 20Disclosure of Interests:Marie Skougaard: None declared, Tanja Schjødt Jørgensen Speakers bureau: Abbvie, Pfizer, Roche, Novartis, UCB, Biogen, and Eli Lilly, Mia Joranger Jensen: None declared, Christine Ballegaard: None declared, Jørgen Guldberg-Møller Speakers bureau: Novartis, Ely Lilly, AbbVie, BK Ultrasound, Alexander Egeberg Grant/research support from: Pfizer, Eli Lilly, Novartis, AbbVie, Janssen Pharmaceuticals, the Danish National Psoriasis Foundation and the Kgl Hofbundtmager Aage Bang Foundation, Consultant of: UCB Pharma (Advisory Board), Speakers bureau: AbbVie, Almirall, Leo Pharma, Samsung Bioepis Co. Ltd., Pfizer, Eli Lilly, Novartis, Galderma, Dermavant, UCB Pharma, Mylan, Bristol-Myers Squibb and Janssen Pharmaceuticals, Robin Christensen: None declared, Joseph F. Merola Consultant of: Merck, AbbVie, Dermavant, Eli Lilly, Novartis, Janssen, UCB Pharma, Celgene, Sanofi, Regeneron, Arena, Sun Pharma, Biogen, Pfizer, EMD Sorono, Avotres and LEO Pharma, Laura C Coates: None declared, Vibeke Strand Consultant of: AbbVie, Amgen, Biogen, Celltrion, Consortium of Rheumatology Researchers of North America, Crescendo Bioscience, Eli Lilly, Genentech/Roche, GlaxoSmithKline, Hospira, Janssen, Merck, Novartis, Pfizer, Regeneron Pharmaceuticals, Inc., Sanofi, UCB, Philip J Mease Grant/research support from: Abbott, Amgen, Biogen Idec, BMS, Celgene Corporation, Eli Lilly, Novartis, Pfizer, Sun Pharmaceutical, UCB – grant/research support, Consultant of: Abbott, Amgen, Biogen Idec, BMS, Celgene Corporation, Eli Lilly, Novartis, Pfizer, Sun Pharmaceutical, UCB – consultant, Speakers bureau: Abbott, Amgen, Biogen Idec, BMS, Eli Lilly, Genentech, Janssen, Pfizer, UCB – speakers bureau, Lars Erik Kristensen Consultant of: UCB Pharma (Advisory Board), Sannofi (Advisory Board), Abbvie (Advisory Board), Biogen (Advisory Board), Speakers bureau: AbbVie, Amgen, Biogen, Bristol-Myers Squibb,Celgene, Eli Lilly, Gilead, Forward Pharma, Janssen Pharmaceuticals, MSD, Novartis, Pfizer, and UCB Pharma

Long-Term Outcome After Ileal Pouch-Anal Anastomosis: Function and Health-Related Quality of Life

2007 ◽  
Vol 50 (10) ◽  
pp. 1545-1552 ◽  
Author(s):  
Ina Berndtsson ◽  
Elisabet Lindholm ◽  
Tom Öresland ◽  
Lars Börjesson
Keyword(s):  
Quality Of Life ◽  
Ileal Pouch ◽  
Health Related Quality ◽  
Term Outcome ◽  
Long Term Outcome ◽  
Anal Anastomosis ◽  
Related Quality ◽  
Health Related

Neuroborreliosis-associated cerebral vasculitis: long-term outcome and health-related quality of life

2013 ◽  
Vol 260 (6) ◽  
pp. 1569-1575 ◽  
Author(s):  
Tobias Back ◽  
Steffi Grünig ◽  
Yaroslav Winter ◽  
Ulf Bodechtel ◽  
Kersten Guthke ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cerebral Vasculitis ◽  
Health Related Quality ◽  
Term Outcome ◽  
Long Term Outcome ◽  
Related Quality ◽  
Health Related

scholarly journals Long-Term Outcome After Stroke Evaluating Health-Related Quality of Life Using Utility Measurement

Stroke ◽  
2006 ◽  
Vol 37 (9) ◽  
pp. 2218-2219 ◽  
Author(s):  
Irene Aprile ◽  
Enrico Di Stasio ◽  
Pietro Tonali ◽  
Luca Padua ◽  
Diana B. Piazzini ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Term Outcome ◽  
Long Term Outcome ◽  
Utility Measurement ◽  
Related Quality ◽  
Health Related
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