Relationship Between Smoking and Patient-reported Measures of Disease Outcome in Ankylosing Spondylitis

2011 ◽  
Vol 38 (12) ◽  
pp. 2608-2615 ◽  
Author(s):  
DEREK L. MATTEY ◽  
SARAH R. DAWSON ◽  
EMMA L. HEALEY ◽  
JONATHAN C. PACKHAM
Keyword(s):  
Quality Of Life ◽  
Logistic Regression ◽  
Disease Activity ◽  
Disease Duration ◽  
Poor Quality ◽  
Regression Analyses ◽  
Multivariate Logistic Regression ◽  
Quality Of Life Measures ◽  
Patient Reported

Objective.To investigate the relationship between smoking and disease activity, pain, function, and quality of life in patients with ankylosing spondylitis (AS).Methods.Patients with AS (n = 612) from areas across the United Kingdom took part in a cross-sectional postal survey. Patient-reported outcome measures including the Bath AS Disease Activity Index, the Bath AS Functional Index (BASFI), a numerical rating scale (NRS) of pain, the AS quality of life questionnaire (ASQoL), and the evaluation of AS quality of life measures (EASi-QoL) were analyzed in terms of smoking status and relationship with pack-year history. The influence of potential confounding factors [age, sex, disease duration, and social deprivation (Townsend Index)] were tested in multivariate logistic regression analyses.Results.Median scores of BASFI, pain NRS, ASQoL, and the 4 EASi-QoL domains were all higher in the group that had ever smoked compared to those who had never smoked (p < 0.0001, p = 0.04, p = 0.003, p < 0.02, respectively). In stepwise multivariate logistic regression analyses, high disease activity and more severe pain were associated primarily with current smoking, disease duration, and Townsend Index score, while decreased function and poor quality of life measures were associated more closely with increasing pack-year history, disease duration, and Townsend Index score. These associations were independent of age and sex.Conclusion.Smoking has a dose-dependent relationship with measures of disease severity in AS. The association with increased disease activity, decreased function, and poor quality of life in smokers was independent of age, sex, deprivation level, and disease duration.

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

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

scholarly journals AB0300 LUPUS DISEASE ACTIVITY CORRELATES WITH QUALITY OF LIFE BUT NOT WITH HEALTH LITERACY STATUS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1176.2-1176
Author(s):  
E. Eraslan ◽  
R. Bilici Salman ◽  
H. Satiş ◽  
A. Avanoglu Guler ◽  
H. Karadeniz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Literacy ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Patient Reported Outcome ◽  
The Body ◽  
Limited Health Literacy ◽  
Patient Reported ◽  
Limited Health

Background:Systemic lupus erythematosus (SLE) is a chronic autoimmune disease of unknown etiology that can affect any organ of the body. SLE is associated with adverse effects on both health and non-health-related quality of life (HRQOL and non-HRQOL). Lupus PRO is a patient reported outcome measure that has been validated in many languages. It has 44 items that cover both HRQOL and non-HRQOL (1). Health literacy is defined as the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions. Multiple studies indicate that people with limited health literacy have worse health status and higher rates of hospitalization (2).Objectives:We aimed to evaluate the relationship between the LLDAS (Lupus Low Disease Activity State) criteria and the Lupus PRO test, as well as the health literacy status of lupus patients.Methods:83 SLE patients (94% women) were included in the study. We performed Lupus PRO and the European Health Literacy Survey tests during the routine follow-up visits of lupus patients to our rheumatology outpatient clinic and admissions to rheumatology inpatient clinic. Available clinical data on medical records were obtained, physician global assessments (PGA) were recorded by the attending physician.Results:LLDAS criteria strongly and inversely correlated with the total score, as well as the mood subunit of the Lupus PRO. Similarly, it also significantly inversely correlated with the body appearence and goals subunits. Health literacy status of the patients did not correlate with their LLDAS scores, ie their disease activities.Conclusion:Our results suggest that lupus disease activity, assessed by LLDAS criteria, significantly correlates with measures of quality of life, spesicifically Lupus PRO test, but not with health literacy status. Further studies are needed to evaluate if health literacy is related with damage, hospitalization or mortality associated with lupus.References:[1]Jolly M, Pickard AS, Block JA, Kumar RB, Mikolaitis RA, Wilke CT, et al., editors. Disease-specific patient reported outcome tools for systemic lupus erythematosus. Seminars in arthritis and rheumatism; 2012: Elsevier.[2]Paasche-Orlow MK, Parker RM, Gazmararian JA, Nielsen-Bohlman LT, Rudd RR. The prevalence of limited health literacy. Journal of general internal medicine. 2005;20(2):175-84.Disclosure of Interests:None declared

scholarly journals Angioedema severity and impacts on quality of life: chronic histaminergic angioedema versus chronic spontaneous urticaria

2021 ◽  
Author(s):  
Marina Sabate-Bresco ◽  
Nuria Rodríguez-Garijo ◽  
JULIÁN AZOFRA ◽  
María L. Baeza ◽  
Carmen Diaz Donado ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Chronic Spontaneous Urticaria ◽  
C Reactive Protein ◽  
Prospective Multicenter Study ◽  
Reactive Protein ◽  
Female Predominance ◽  
Patient Reported ◽  
Considerable Impact

Background: Chronic histaminergic angioedema (CHA) is defined as recurrent episodes of isolated angioedema (without hives) of unknown cause that respond to the same treatment as chronic spontaneous urticaria (CSU). Quality of life (QoL) studies have not been performed for CHA, except those carried out in the context of CSU associated with angioedema attacks (CSU-AE). Moreover, biomarkers for monitoring disease activity in CHA have not been identified. We aim to describe the burden of CHA and impact on patient QoL, compare the findings to those in CSU-AE patients, and investigate biomarker associations with disease severity and QoL parameters. Methods: We performed a prospective multicenter study that included 68 patients with CHA and 63 patients with CSU-AE. Demographic and clinical variables were collected. Validated patient-reported questionnaires were employed to analyze the quality of life and disease activity. Blood and serological parameters, including blood cell count, C-reactive protein, D-dimer and total IgE, were also analyzed. Results: Angioedema disease activity was significantly higher in CSU-AE patients (median AAS7, IQR: 1, [0–1]) than CHA patients (0, [0–1]; p= 0.022). A considerable impact on QoL was found in both groups, although significantly worse values were found for CSU-AE (median AEQoL, IQR: 37, [10–65]; p=0.005). CHA patients were older than CSU-AE patients, and female predominance was not observed. Conclusions: Angioedema severity and QoL impacts are significantly worse in CSU than in chronic histaminergic angioedema. Angioedema should be included in severity urticaria scores (UAS) as well as in specific quality of life urticaria scales.

scholarly journals Characteristics and patient-reported outcomes associated to dropout in severely affected oncological patients

2021 ◽  
Author(s):  
Pimrapat Gebert ◽  
Daniel Schindel ◽  
Johann Frick ◽  
Liane Schenk ◽  
Ulrike Grittner
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Cancer Patients ◽  
Patient Reported Outcomes ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Poor Quality ◽  
Drop Out ◽  
Patient Reported

Abstract BackgroundPatient-reported outcome measures (PROMs) are commonly used and are surrogates for clinical outcomes in cancer research. In the research setting of very severe diseases such as cancer, it is difficult to avoid the problem of incomplete questionnaires from drop-out or missing data due to patients who deceased during observation period. We aimed to explore patient characteristics and patient-reported outcomes associated with the time-to-dropout. MethodsIn the Oncological Social Care Project (OSCAR) study the condition of participants was assessed four times within 12 months (t0: baseline, t1: 3 months, t2: 6 months, and t3: 12 months) by validated PROMs. We performed competing-risks regression based on Fine and Gray’s proportional sub-distribution hazards model for exploring factors associated with time-to-dropout. Death was considered as competing risk. ResultsThree hundred sixty-two participants were analyzed in the study. 193 (53.3%) completed follow-up at 12 months, 67 (18.5%) patients dropped out, and 102 patients (28.2%) died during the study period. Poor subjective social support was related to higher risk for drop-out (SHR=2.10; 95%CI: 1.01 – 4.35). Lower values in health-related quality of life were related to drop-out and death. The subscales global health status/QoL, role functioning, physical functioning, and fatigue symptom in the EORTC QLQ-C30 were key characteristics associated with early drop-out.ConclusionSeverely affected cancer patients with poor social support and poor quality of life seem more likely to drop out of studies compared to patients with higher levels of social support and quality of life. This should be considered when planning studies assessing cancer patients. Methods to monitor drop-outs timely and handle missing outcomes might be used. Results of such studies have to be interpreted with caution in light of the particular drop-out mechanisms.

scholarly journals Health-related quality of life in porphyria cutanea tarda: a cross-sectional registry based study

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Janice Andersen ◽  
Janne Thomsen ◽  
Åshild Rostad Enes ◽  
Sverre Sandberg ◽  
Aasne K. Aarsand
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Porphyria Cutanea Tarda ◽  
Bodily Pain ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Abstract Background Porphyria cutanea tarda (PCT) is a rare, photosensitive disease characterized by skin fragility and blistering on sun-exposed areas. There is little previous research on how this condition affects health-related quality of life (HRQoL) and to the best of our knowledge this is the largest sample of PCT patients surveyed about their HRQoL. The aims of this study were to describe HRQoL, symptoms, susceptibility factors, disease activity and treatment in patients with PCT, and investigate the associations between these factors. Methods This is a cross-sectional, retrospective study based on patient-reported outcome and laboratory data. The Norwegian Porphyria Centre diagnoses all patients with PCT in Norway, all of whom are invited to participate in the Norwegian Porphyria Registry. Between December 2013–2015, 111 patients received a postal questionnaire and invitation to participate. Results Sixty-eight persons responded, with seven being excluded due to prolonged response time or missing information, resulting in 61 participants in the final analyses (55%). Median age was 60 years and 33 were female. We found a moderate negative relationship between the type and localisation of PCT symptoms and both mental (r = −.354 p < 0.01) and physical (r = −.441, p < 0.01) aspects of HRQoL. Participants who had started treatment when answering the questionnaire reported significantly better physical functioning and less bodily pain than those who had not started treatment. We did not observe an association between biochemical markers of disease activity and symptoms or HRQoL. Itching, a symptom that has received little attention in PCT was reported by 59% of the participants. Conclusions Our results show that reduced HRQoL is associated with more symptoms and not having started treatment. PCT is a rare disease, and there is a need for the development of best-practice guidelines to facilitate good patient care.

Association of Quality of Life Measures and Otolaryngologic Care in Cystic Fibrosis Patients

2021 ◽  
pp. 000348942110456
Author(s):  
Stephen Leong ◽  
Rahul K. Sharma ◽  
Chetan Safi ◽  
Emily DiMango ◽  
Claire Keating ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Demographic Data ◽  
Critical Role ◽  
Sinus Surgery ◽  
Coordinated Care ◽  
Quality Of Life Measures ◽  
Patient Reported ◽  
Snot 22

Objectives: Appropriate management of chronic rhinosinusitis (CRS) among patients with cystic fibrosis (CF) is important in improving quality of life. Otolaryngologists play a critical role in reducing CRS symptom burden. This study seeks to evaluate the role of patient-reported quality-of-life measures in guiding interventions for CF-related sinus disease. Methods: We performed a prospective, cross-sectional study of 105 patients presenting to a CF-accredited clinic between July and September 2018. Demographic data and sinus surgery history were collected, in addition to Sino-Nasal Outcome Test (SNOT-22) and Questionnaire of Olfactory Disorders (QOD-NS) scores. Statistical analysis was conducted using correlation and non-parametric Mann-Whitney U tests. Results: Baseline well-care visits accounted for 71.4% of all clinical evaluations. Prior otolaryngology intervention was noted in 69 (66%) patients, where the majority of these patients (63/69; 91%) underwent endoscopic sinus surgery (ESS). Patients with a history of otolaryngology intervention had an average SNOT-22 score of 33.2 (SD = 20.6) compared to 24.9 (SD = 18.5) for patients without prior intervention ( P = .048). The average QOD-NS score was 5.5 (SD = 6.4) among patients referred to otolaryngologists and 3.1 (SD = 5.7) for non-referred patients ( P = .012). SNOT-22 and QOD-NS scores were modestly correlated ( R of .43). Conclusion: CF patients with symptoms resulting in worse quality-of-life assessments were more likely to have established coordinated care with an otolaryngologist. Further validation of the utility of SNOT-22 and QOD-NS questionnaires as care coordination metrics is necessary in the CF population.

Secukinumab improves patient-reported outcomes in subjects with active psoriatic arthritis: results from a randomised phase III trial (FUTURE 1)

2016 ◽  
Vol 76 (1) ◽  
pp. 203-207 ◽  
Author(s):  
Vibeke Strand ◽  
Philip Mease ◽  
Laure Gossec ◽  
Ori Elkayam ◽  
Filip van den Bosch ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psoriatic Arthritis ◽  
Disease Activity ◽  
Patient Reported Outcomes ◽  
Life Quality ◽  
Phase Iii ◽  
Patient Reported ◽  
Related Quality ◽  
Global Disease Activity

ObjectiveTo evaluate the effect of secukinumab on patient-reported outcomes (PROs) in subjects with active psoriatic arthritis (PsA) in the FUTURE 1 study.MethodsSubjects were randomised 1:1:1 to receive intravenous (i.v.) secukinumab 10 mg/kg at weeks 0, 2 and 4 followed by subcutaneous secukinumab 150 or 75 mg every 4 weeks or matching placebo until week 24.ResultsAt week 24, subjects receiving secukinumab i.v.→150 mg or i.v.→75 mg reported greater least squares mean changes from baseline than those receiving placebo in patient global assessment of disease activity (−20.6 and −20.0 vs −7.4, respectively), patient assessment of pain (−20.8 and −20.4 vs −6.7), psoriatic arthritis quality of life (−3.5 and −3.2 vs −0.4), Dermatology Life Quality Index (−8.8 and −7.9 vs 0.7); p<0.0001 vs placebo for both secukinumab groups for above PROs and Functional Assessment of Chronic Illness Therapy-Fatigue (6.74 (p<0.05 vs placebo) and 6.03 vs 4.00); all of which well exceeded minimum clinically important differences.ConclusionsIn subjects with PsA, secukinumab treatment resulted in clinically meaningful improvements in global disease activity, pain, generic and disease-specific measures of health-related quality of life and fatigue.Trial registration numberNCT01392326; Results.

Patient-reported Flares in Ankylosing Spondylitis: A Cross-sectional Analysis of 234 Patients

2016 ◽  
Vol 44 (4) ◽  
pp. 425-430 ◽  
Author(s):  
Charlotte Jacquemin ◽  
Walter P. Maksymowych ◽  
Annelies Boonen ◽  
Laure Gossec
Keyword(s):  
Quality Of Life ◽  
New York ◽  
Ankylosing Spondylitis ◽  
Disease Activity ◽  
Self Report ◽  
Life Questionnaire ◽  
Related Factors ◽  
Cross Sectional ◽  
Patient Reported

Objective.Ankylosing spondylitis (AS) is characterized by periodic flares. The objective of this study was to assess the frequency of patient-reported flares and their related factors.Methods.This cross-sectional study analyzed the 2004 data of a Canadian cohort. Participants had AS according to the modified New York criteria. Current flare status (“Are you experiencing a current flare”?), number of flares over the past 3 months, their average duration, the Bath Ankylosing Spondylitis Disease Activity and Functional Index (BASDAI and BASFI, respectively), and the AS Quality of Life questionnaire were assessed by self-report. Univariate and multivariate regressions analyzed the factors associated with current flare.Results.Among 234 analyzed patients, 169 (73.5%) were men, mean age was 45.5 (± 11.8) years, mean disease duration of 21.7 (± 11.7) years, and mean BASDAI and BASFI (0–10) of 4.4 (± 2.3) and 3.4 (± 2.6), respectively; 18 (7.7%) received antitumor necrosis factor (anti-TNF). Overall, 175 patients (74.8%) reported flares and 117 (50%) were currently in flare. Patients reporting flares had a median of 3 flares in 3 months, with a median duration of 2 weeks. Overall, the 234 patients spent a median of 25% of their time in flare. In multivariate analyses, current flare was significantly associated with higher BASDAI (OR 2.01, p = 0.01), worse quality of life (OR 1.37, p = 0.004), shorter AS duration (OR 1.19, p = 0.04), and less anti-TNF (OR 7.14, p = 0.03).Conclusion.In this population, before the wide use of biologics, flares were frequent and long. As expected, flare was associated with higher disease activity, suggesting the validity of the concept of patient-reported flares.

scholarly journals Impact of skin, musculoskeletal and psychosocial aspects on quality of life in psoriatic arthritis patients: A cross-sectional study of outpatient clinic patients in the biologic treatment era

RMD Open ◽  
2020 ◽  
Vol 6 (1) ◽  
pp. e001223 ◽  
Author(s):  
Glenn Haugeberg ◽  
Brigitte Michelsen ◽  
Arthur Kavanaugh
Keyword(s):  
Quality Of Life ◽  
Psoriatic Arthritis ◽  
Disease Activity ◽  
Outpatient Clinic ◽  
Negative Impact ◽  
Psychosocial Burden ◽  
Biologic Treatment ◽  
Patient Reported ◽  
The Impact

BackgroundIn psoriatic arthritis (PsA), both psoriasis and musculoskeletal manifestations may impair Health-Related Quality of Life (HRQoL). Our objective was to explore the impact of the various disease manifestations and disease consequences, including psychosocial factors, on HRQoL in PsA patients treated in the biologic treatment era.MethodsData collection in the 131 outpatient clinic PsA patients assessed included demographics, disease activity measures for both skin and musculoskeletal involvement and patient-reported outcome (PRO) measures, treatment and psychosocial burden. The skin dimension of quality of life was assessed by the Dermatology Life Quality Index (DLQI) and the overall HRQoL by the 15-Dimensional (15D) Questionnaire.ResultsThe mean age was 51.9 years, PsA disease duration 8.6 years, 50.4% were men, 56.9% were employed/working and 47.7% had ≥1 comorbidities. Prevalence of monotherapy with conventional synthetic disease-modifying antirheumatic drugs (csDMARDs) was 36.6% and with biologic DMARDs 12.2% and combination of both 22.9%. Mean DLQI was 3.3 and 15D 0.84. In adjusted analysis, not employed/working, higher scores for fatigue, sleep disturbances, anxiety and depression, Modified Health Assessment Questionnaire and presence of comorbidities were independently associated with impaired HRQoL (lower 15D scores), whereas Psoriasis Area Severity Index (PASI) and DLQI were not. Younger age and higher Psoriatic Arthritis Disease Activity Score and PASI scores were independently associated with impaired skin quality of life (higher DLQI score).ConclusionOur study highlights the negative impact the psychosocial burden, impaired physical function and comorbidities has on reduced HRQoL in PsA outpatients. Thus, to further improve HRQoL in PsA patients, not only physical concerns but also psychological concerns need to be addressed.

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