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The Portuguese Rheumatology Society (SPR) embraced quality as a major goal and launched, in early 2015, a program to aim for excellence in global clinical care: Rheuma SPACE - Standard Practice Aiming Clinical Excellence. Evaluating daily reality is the first step in a quality development timeline, ultimately contributing for health gains. Herein we describe the results of the evaluation of the quality indicators defined for this project and the improvement strategies identified. The Rheuma SPACE project included three phases: 1) establishing a set of quality indicators and an excellence quality model; 2) assessment of the current care at Rheumatology departments concerning the defined quality indicators in the scope of the excellence model; and 3) elaboration of global and customized reports for each participating Rheumatology department, resulting in the identification of improvement opportunities. Ten Rheumatology departments, countrywide, including larger and smaller institutions, were asked to participate in Rheuma SPACE. This resulted in an individual report for each department along with global benchmarking practices analysis. Furthermore, a list of improvement initiatives was developed. We concluded that departments lack physicians and need exclusively dedicated nurses. Time dedicated to research and audit activities should be specifically allocated. Internal contracting is well established, and professionals are committed to targets. Processes are still suboptimal, needing standardization of triage criteria, more frequent follow-up, as well as better medical records and multidisciplinary coverage. Regarding outcomes, patients are satisfied with the provided care and professionals with the working environment. However, department facilities for the former, and career related aspects, for the latter should improve. With this innovative study conducted in Portugal we expect to have enlightened tailored opportunities for improvement, ensure patient-focused practices and be able to define the indispensable quality requirements for excellence.

© The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License., Background: The vasculitides are a group of rare diseases with different manifestations and outcomes. New therapeutic options have led to the need for long-term registries. The Rheumatic Diseases Portuguese Register, Reuma.pt, is a web-based electronic clinical record, created in 2008, which currently includes specific modules for 12 diseases and > 20,000 patients registered from 79 rheumatology centres. On October 2014, a dedicated module for vasculitis was created as part of the European Vasculitis Society collaborative network, enabling prospective collection and central storage of encrypted data from patients with this condition. All Portuguese rheumatology centres were invited to participate. Data regarding demographics, diagnosis, classification criteria, assessment tools, and treatment were collected. We aim to describe the structure of Reuma.pt/vasculitis and characterize the patients registered since its development. Results: A total of 687 patients, with 1945 visits, from 13 centres were registered; mean age was 53.4 ± 19.3 years at last visit and 68.7% were females. The most common diagnoses were Behçet’s disease (BD) (42.5%) and giant cell arteritis (GCA) (17.8%). Patients with BD met the International Study Group criteria and the International Criteria for BD in 85.3 and 97.2% of cases, respectively. Within the most common small- and medium-vessel vasculitides registered, median [interquartile range] Birmingham Vasculitis Activity Score (BVAS) at first visit was highest in patients with ANCA-associated vasculitis (AAV) (17.0 [12.0]); there were no differences in the proportion of patients with AAV or polyarteritis nodosa who relapsed (BVAS≥1) or had a major relapse (≥1 major BVAS item) during prospective assessment (p = 1.00, p = 0.479). Biologic treatment was prescribed in 0.8% of patients with GCA, 26.7% of patients with AAV, and 7.6% of patients with BD. There were 34 (4.9%) deaths reported. Conclusions: Reuma.pt/vasculitis is a bespoke web-based registry adapted for routine care of patients with this form of rare and complex diseases, allowing an efficient data-repository at a national level with the potential to link with other international databases. It facilitates research, trials recruitment, service planning and benchmarking.

Objectives: Early diagnosis and treatment of Rheumatoid Arthritis (RA) and axial Spondylarthritis (axial SpA) can limit the impact of disease outcomes. This study evaluated the effectiveness of a referral program on the identification of patients with RA and axial SpA. Methods: This was an observational, prospective, randomized (by clusters) study conducted in Portugal to evaluate the impact of the implementation of a set of referral support actions (RSA). The study was divided in two sub-studies, the RA sub-study and the axial SpA sub-study. 28 participating primary care units were randomly (by clusters) assigned to RSA or control group (with no intervention). Both RSA and control groups identified and referred patients with suspected RA or axial SpA to the rheumatology unit of the reference hospital. The primary objective was to evaluate the correct diagnosis of RA or axial SpA cases confirmed by the rheumatologist of the reference hospital. Results: RA-Substudy: A total of 340 patients were recruited (144 in the RSA-exposed group; 196 in the control). RA diagnosis confirmation was 7.3% (95%CI, 2.1-12.5%) in RSA group versus 2.7% (95%CI, 0.0-5.7%) in control group RSA effect was positive but moderate (4.6%) and not statistically significant (95% CI, 0.0%-11.8%; p=0.222, adjusted for clustering effect). Rate of confirmed arthritis of any type was 16.9% (n=14/83) in the RSA group and 6.0% (n=5/83) in the control group. This difference was statistically significant and favorable to RSA group (OR=3.2; 95% CI 1.1-9.2; p=0.028). Axial SpA-Substudy: A total of 231 patients were recruited (108 in the RSA-exposed group; 123 in the control). Axial SpA diagnosis confirmation was 8.7% (95% CI, 2.1-15.4%) in RSA group versus 5.6% (95% CI, 0.0-11.73%) in control group. RSA effect was positive (3.1%) but not statistically significant (95% CI, -7.5- 12.9%; p=0.568, adjusted for clustering effect). Conclusions: This study showed a positive tendency for the RSA program, most relevantly on the diagnosis of patients with any type of arthritis in the RA sub-study. It is possible that a referral program more comprehensive than the one herein tested might improve early diagnosis of RA and SpA.

Background: Quality of care is a key component of the right to health, and the route to equity and dignity. The aim of the project Rheuma SPACE - Standard Practice Aiming Clinical Excellence was to develop a set of quality indicators focused in rheumatoid arthritis care and apply them to rheumatology departments of the Portuguese National Health Service in order to benchmark the care for these patients. This article details the methodology that was applied. Methodology: This was a single country, three-phase project, each phase comprising multiple steps. The first step defined quality indicators and the excellence quality model to be used. It involved a literature search for international benchmarking of quality of care initiatives and indicators, followed by a pre-selection of an initial set of indicators. The set of indicators was latter on narrowed after an online Delphi round with all Portuguese rheumatologists and two consensus meetings involving the study task force. A set of 26 quality indicators was defined, within the three classic Donabedian dimensions of healthcare quality: Structure (9), Processes (11), and Outcomes (6). These indicators cover eleven domains of quality of care: personnel and organizational structure, training and research, facilities, equipment and information technology, budgeting and financial resources, access to care, clinical records, patient communication, multidisciplinary management, clinical outcomes, and patient and personnel satisfaction. Decision on quality and excellence thresholds for each of the 26 quality indicators was agreed upon a consensus meeting gathering principal investigators of the eight Rheumatology Departments that decided to participate, task force core set members and invited representatives of all Portuguese Departments/Units. Rheumatoid arthritis was the chosen disease model of the project based on the reliability of the outcomes to be measured in the context of this condition. The second step was the assessment of the participating Rheumatology Departments. During eighteen months, research teams applied the 26 quality indicators to their own Departments. The third step comprised data analysis and the elaboration of individual Rheumatology Department reports and of a global public report. Results: Eight Departments, comprising 80 specialists, 20 residents and 30 nurses, covering 5.904.080 inhabitants, underwent quality evaluation. More than one thousand patients (1,325) and 113 health professionals’ surveys were analysed, as well as data from 570 clinical records and 3,927 medical appointments on rheumatoid arthritis patients. Discussion: 26 quality indicators were used for the first evaluation of Portuguese Rheumatology Departments, turning Rheuma SPACE into a pioneer project. Data analysis and benchmarking will be the subject of a further publication.

Background Ankylosing spondylitis (AS) has a significant burden upon the individual, family and society. Understanding the economic impact of AS is crucial to substantiate policies that promote early referral, diagnosis and treatment. Objectives To assess the economic impact of AS in Portugal concerning healthcare utilization and work disability. Methods The Assessment of REsults in Ankylosing spondylitis (arEA) study was developed by the NOVA-Information Management School (Lisbon) in collaboration with the Portuguese Society of Rheumatology, the Portuguese Association of Family Physicians, the National Association of Primary Care Units, the National Association of AS Patients and the Portuguese League Against Rheumatic Diseases. The arEA aimed at assessing reasons for delayed diagnosis of AS, as well as disease impact in patients’ lives, global health and work. A comprehensive online survey was developed and sent to AS patients. Data on demographics, lifestyle habits, daily life activities, working habits, disease indexes and healthcare utilization was retrieved. Costs of the disease for patients resulting from the use of health systems was obtained thorough patient’s declaration, the cost for the national health service (SNS) was obtained combining primary data and secondary data related with the average costs of service use. Finally, the impact over the economy was also estimated through the participation of patients in labor market and using as mediator variables the absenteeism and presenteeism. A set of generalized linear models were used to identify the factors with significant effect over health status, SNS costs and impact over economy. Results 354 patients responded the survey, 42.1% female, more frequently from the 35-44 year-old age group. In the previous 12 months, 76% reported using the National Healthcare System (SNS) for AS-related reasons (85% outpatient visits; 74% diagnostic exams; 48% ER visits; 8% inpatient admissions). During that period, estimated SNS expenditure with AS patients reached €47 million, excluding costs with medication (ongoing analysis), distributed as: outpatient visits €25 million, diagnostic exams €7 million, ER visits €3 million and inpatient admissions €12 million. Adding to this, patients spent on average €84 million out of their own pocket on AS-related expenses (€1.786 per patient: outpatient visits €245, diagnostic exams €151, ER visits €48, inpatient admissions €415, medication €593, travelling expenses €334). Regarding work disability, working AS patients reported an average of 12 days on leave of absence and 25 days on sick leave per year, with an estimated cost of €28 and €57 million, respectively. Presenteeism led to a loss of 73 working days with a cost of €165 million. Taking also into account patients with prolonged leaves of absence (€72 million), permanent leaves (€18 million), unemployed (€50 million) and family medical leaves (€47 million), the overall costs with work disability in AS reached €437 million in one year. Conclusion AS-related work disability and healthcare resource utilization have an enormous economic impact in Portugal. Investment in strategies that encourage early referral, diagnosis and treatment is fundamental to mitigate such burden. Disclosure of Interests None declared

Background: AS is known to have a significant burden upon the individual, family and society. It is essential to assess the impact of AS in patients’ lives, to raise awareness and improve early referral, diagnosis and treatment, for a better quality of life. Objectives: To assess the impact of AS in the life of Portuguese patients (work, daily activities, social life). Methods: The Assessment of REsults in Ankylosing spondylitis (arEA) study was developed by the NOVA-IMS in cooperation with: Portuguese Society of Rheumatology, Portuguese Association of Family Physicians, National Association of Primary Care Units, National Association of AS Patients and the Portuguese League Against Rheumatic Diseases. The arEA aimed at assessing reasons for delayed referral of suspicious cases of AS to the rheumatologist, as well as disease impact in patients’ lives, global health and work. A comprehensive online survey was developed with the collaboration of LPCDR and sent to AS patients. Data on demographics, lifestyle habits, daily life activities, working habits, disease indexes and healthcare utilization, health status/quality of life indicators, EQ-5D and BASDAI scales. A generalized linear model was adjusted in order to identify the factors impacting on quality of life of patients. Results: 354 patients responded the survey, 42.1% female, most frequently from the 35-44 year-old age group. Mean age at disease onset was 27 years old, while the diagnosis was confirmed 7 years later. In the previous 12 months, the average of working days lost due to AS issues was 37 (including sick leaves). During that period, AS has affected work productivity in average around 73 days. Cumulatively, patients’ relatives or friends had also lost about 13 days of work, to provide them assistance. Regarding limitations in daily life activities, house cleaning (55.5%), physical exercise (46.5%), getting in/out of bed (45.6%), using stairs (37.9%), shopping (37.4%) and tying shoes (35.2%) were reported as being highly limited by AS. As for the social life, family and friends’ relationships were reported as not being affected by over 60% of AS patients. However, 19.8% of the respondents have reported a worse relationship with their partners after diagnosis, and 29.7% reported having decreased the frequency of sexual intercourse. Leisure activities, were only reported as not being affected by 34.6% and 40.5% of patients, while the practice of sports has much decreased in 40.7% of the respondents. Almost 80% had mobility issues during the last year, and over 65% had their usual activities/routines affected by AS. The average BASDAI score is 5.5 and the EQ visual analogue scale 55. Analyzing the impact of treatment, biologics and biosimilars were reported as having significantly improved patients’ quality of life, except for physical or sexual activity. Conclusion: AS has a major impact in the daily life of patients, work productivity, social relationships and leisure activities. Early diagnosis and treatment, along with physical rehabilitation/exercise plans, can reduce this impact and improve their quality of life. Disclosure of Interests: None declared

Background While food pricing is a promising strategy to improve diet, the prospective impact of food pricing on diet has not been systematically quantified. Objective To quantify the prospective effect of changes in food prices on dietary consumption. Design We systematically searched online databases for interventional or prospective observational studies of price change and diet; we also searched for studies evaluating adiposity as a secondary outcome. Studies were excluded if price data were collected before 1990. Data were extracted independently and in duplicate. Findings were pooled using DerSimonian-Laird's random effects model. Pre-specified sources of heterogeneity were analyzed using meta-regression; and potential for publication bias, by funnel plots, Begg's and Egger's tests. Results From 3,163 identified abstracts, 23 interventional studies and 7 prospective cohorts with 37 intervention arms met inclusion criteria. In pooled analyses, a 10% decrease in price (i.e., subsidy) increased consumption of healthful foods by 12% (95%CI = 10–15%; N = 22 studies/intervention arms) whereas a 10% increase price (i.e. tax) decreased consumption of unhealthful foods by 6% (95%CI = 4–8%; N = 15). By food group, subsidies increased intake of fruits and vegetables by 14% (95%CI = 11–17%; N = 9); and other healthful foods, by 16% (95%CI = 10–23%; N = 10); without significant effects on more healthful beverages (-3%; 95%CI = -16-11%; N = 3). Each 10% price increase reduced sugar-sweetened beverage intake by 7% (95%CI = 3–10%; N = 5); fast foods, by 3% (95%CI = 1–5%; N = 3); and other unhealthful foods, by 9% (95%CI = 6–12%; N = 3). Changes in price of fruits and vegetables reduced body mass index (-0.04 kg/m2 per 10% price decrease, 95%CI = -0.08–0 kg/m2; N = 4); price changes for sugar-sweetened beverages or fast foods did not significantly alter body mass index, based on 4 studies. Meta-regression identified direction of price change (tax vs. subsidy), number of intervention components, intervention duration, and study quality score as significant sources of heterogeneity (P-heterogeneity

Copyright © 2015 Vasco C. Romão et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited., Objectives: To compare the effectiveness of TNF inhibitors (TNFi) and tocilizumab in rheumatoid arthritis (RA) treatment, according to different response criteria. Methods: We included RA patients registered in the Rheumatic Diseases Portuguese Register treated with TNFi or tocilizumab for at least 6 months, between January 2008 and July 2013. We assessed remission/low disease activity (LDA) at 6 months according to DAS28, CDAI, and SDAI, as well as Boolean ACR/EULAR remission and EULAR response rate, adjusting for measured confounders. Results: Tocilizumab-treated patients (n = 95) presented higher baseline disease activity and were less frequently naïve to biologics compared to TNFi users (n = 429). Multivariate logistic regression analysis including the propensity score for receiving tocilizumab showed that patients treated with tocilizumab were more likely to achieve remission or LDA according to DAS28 (OR = 11.0/6.2, 95% CI 5.6-21.6/3.2-12.0), CDAI (OR = 2.8/2.6, 95% CI 1.2-6.5/1.3-5.5), or SDAI (OR = 3.6/2.5, 95% CI 1.5-8.7/1.1-5.5), as well as a good EULAR response (OR = 6.4, 95% CI 3.4-12.0). However, both groups did not differ in Boolean remission (OR = 1.9, 95% CI 0.8-4.8) or good/moderate EULAR response (OR = 1.8, 95% CI 0.8-4.5). Conclusions: Compared with TNFi, tocilizumab was associated with greater likelihood of achieving DAS28, CDAI, and SDAI remission/LDA and EULAR good response. Boolean remission and EULAR good/moderate response did not differ significantly between groups., Reuma.pt has been supported by unrestricted grants from Abbvie, Merck Sharp and Dohme, Pfizer, UCB Pharma, and Roche. The authors would like to acknowledge Fernando Martins, IT, from the Portuguese Society of Rheumatology for his technical support and management of Reuma.pt data.

Copyright © 2015 Helena Canhão et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited., Background: The aim of our work was to replicate, in a Southern European population, the association reported in Northern populations between PTPRC locus and response to anti-tumor necrosis factor (anti-TNF) treatment in rheumatoid arthritis (RA). We also looked at associations between five RA risk alleles and treatment response. Methods: We evaluated associations between anti-TNF treatment responses assessed by DAS28 change and by EULAR response at six months in 383 Portuguese patients. Univariate and multivariate linear and logistic regression analyses were performed. In a second step to confirm our findings, we pooled our population with 265 Spanish patients. Results: No association was found between PTPRC rs10919563 allele and anti-TNF treatment response, neither in Portuguese modeling for several clinical variables nor in the overall population combining Portuguese and Spanish patients. The minor allele for RA susceptibility, rs3761847 SNP in TRAF1/C5 region, was associated with a poor response in linear and logistic univariate and multivariate regression analyses. No association was observed with the other allellic variants. Results were confirmed in the pooled analysis. Conclusion: This study did not replicate the association between PTPRC and the response to anti-TNF treatment in our Southern European population. We found that TRAF1/C5 risk RA variants potentially influence anti-TNF treatment response., This work was supported by a grant from Harvard-Portugal Program HMSP-ICS/SAU-ICT/0002/2010. Daniel H. Solomon received support for this work from the NIH (K24-AR-055989). Elizabeth W. Karlson received support for this work from NIH (K24-AR-AR0524). Reuma.pt received unrestricted grants from Abbott, Bristol-Myers Squibb, Merck Sharp and Dohme, Pfizer, Roche, and UCB Pharma.