Introduction: Systemic sclerosis (SSc) is a rare chronic autoimmune disease characterised by microvascular damage, immune dysregulation and fibrosis, affecting the skin, joints and internal organs. Interstitial lung disease (ILD) is frequently associated with systemic sclerosis (SSc-ILD), leading to a poor prognosis and a high mortality rate. The aim of the BUILDup study (BUrden of Interstitial Lung Disease Consensus Panel) was to investigate the overall disease management and to estimate the social and economic burden of SSc-ILD across 8 European countries. Methods: A modified Delphi method was used to obtain information on the management of SSc-ILD patients among 40 specialists (panellists) from 8 European countries. Average annual costs per patient and country were estimated by means of a direct cost-analysis study.
BackgroundSince SLE tends to occur during the productive years of life, the cost of the disease derives not only from direct health expenditures but also from the impact the disease has on work productivity.ObjectivesTo describe the impact of SLE on work productivity and to assess the factors influencing this outcome measure.MethodsWe studied 225 patients (1987 ACR criteria), age ≥16 years. Work productivity was assessed with the WPAI:Specific Health Problem for SLE. The WPAI yeilds four scores: % work time missed, % of impairment at work, % of overall work impairment and % of non-work related activity impairment. The relationship between socioeconomic-demographic, self-reported quality of life (as per the Lupus PRO), clinical data [clinical manifestations, diagnostic criteria (1987 ACR criteria), disease activity (SELENA-SLEDAI), damage (SLICC Damage Index), co-morbidities (Charlson Index)] and the four scores of the WPAI was examined with the Man-Whitney U test and Spearman's Rho test. Variables with p≤0.10 in these analyses were then entered in a multivariable linear regression with each score of the WPAI as the dependent variable.ResultsPatients were predominantly females (89%) and they had a median (IQR) age at diagnosis of 26.0 (16.0) years. Median (IQR) disease duration was 96.0 (144.0) months. Median (IQR) percentage of work time missed was 0.0 (25.0)%, of impairment at work was 10.0 (56.0)%, of overall work impairment 0.0 (56.0)% and of activity impairment 40.0 (60.0)%. Variables significant in both, the univariable and multivariable analyses, are shown in Table belowConclusionsWhile work productivity is not largely affected in this sample of patients, non-work related activities seems to have a much greater impact in SLE. Patients with a higher disease activity and number of co-morbidities and a lower self-perceived quality of life are at higher risk for work productivity impairmentDisclosure of InterestNone declared
BackgroundAdherence to treatment in rheumatoid arthritis (RA) is influenced by numerous factors. Although patients with RA are aware that compliance is important for disease control, there is evidence that they often drop out the prescribed use of synthetic DMARDs.ObjectivesThe OBSERVAR Study aims to confirm the lack of adherence to synthetic DMARDs in patients with RA and look for the main reasons for dropping out.MethodsBetween July and August 2014, 18 Spanish consultant rheumatologists were asked, using a two-round Delphi process, to determine the degree of agreement with multiple causes of non-compliance. These reasons were selected by a systematic literature search in PubMed and Google Scholar, based on scientific publications. 66 reasons were selected, divided into 3 blocks, related to patients, to healthcare professionals and inherent to the DMARD treatment itself. The degree of agreement with each of these was identified on a scale from 1 to 9 (minimum and maximum agreement). The consistency of these agreements was determined by two criteria: based on the group mean, and based on simultaneous observance of mean and median ≥7, standard deviation and interquartile range ≤1.00, and coefficient of variation ≤0.25.ResultsThere was agreement with most of the statements selected (75.76%) and only one disagreement. Most frequent among the patient-related reasons were insufficient knowledge of the disease and importance of treatment adherence. The main reasons related to healthcare professionals were insufficient follow-up, lack of screening for non-compliant patients and lack of implementation of procedures aimed at improving adherence. With respect to treatment, general aspects were agreed such as the total number of pills or lack of reminder tools. When we applied the criterion of consistency of agreement, three reasons were highlighted (4.5%): not knowing what to do when the patient suffered an adverse event with the DMARD, lack of screening to detect non-compliant patients and lack of implementation of procedures to improve therapeutic compliance.ConclusionsThe lack of strict adherence by patients in the treatment of RA with synthetic DMARDs is relatively common. Most of the reasons given for this have been confirmed in our study. The situation must be improved by: establishing objectives agreed with the patient; teaching them properly about the disease, treatment, expected side effects, the importance of adherence and its consequences; and by trying to identify potentially non-compliant patients early and subsequent continuous monitoring of their adherence.AcknowledgementsRoche Farma SpainDisclosure of InterestNone declared
BackgroundSLE can inflict significant morbidity that is reflected not only in the patients' overall clinical status but also in their ability to work.ObjectivesTo examine the cumulative rate and factors associated with work disability in SLE patients in the Province of Cόrdoba, ArgentinaMethodsWe studied 225 patients, age >16 years. Work disability was defined by patients' self-report of not working because of their health status. The cumulative rate of work disability was estimated with the Kaplan-Meier method. The relationship between socioeconomic-demographic, self-reported QoL (Lupus PRO) and clinical data [clinical manifestations, diagnostic criteria (1987 ACR criteria), disease activity (SELENA-SLEDAI), damage (SLICC Damage Index), co-morbidities (Charlson Index)] and work disability was examined with Chi-Square and Mann-Whitney U test. Variables with p≤0.10 in these analyses were then examined by multivariable logistic regression with work disability as the dependent variableResultsPatients were predominantly females (89%) and they had a median (IQR) age at diagnosis of 26.0 (16.0) years. Median disease duration was 96.0 (144.0) months. Fifty-five (24%) patients were work-disabled. The cumulative rate (SE) of work disability was 5% at one year, 25% at five years and 40% at 10 years. In the multivariable analysis, a lower socio-economic status (OR=1.744, 95%CI 1.063-2.861; p=0.028) and a lower QoL of life (OR=0.947, 95%CI 0.910-0,985; p=0.07) were associated with work disabilityConclusionsThe cumulative rate of self-reported work disability is high among this sample of SLE patients, reaching 40% at 10 years. None of the variables related to the disease manifestations or its severity were associated with work disability. Patients of lower socio-economic status and lower self reported QoL are at higher risk of becoming work disabled. The latter would imply that any pro-active intervention directed towards preventing work disability among SLE patients in this population should have a broader approach than the disease itselfDisclosure of InterestNone declared
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