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18
result(s) for
"Penélope Esther Palominos"
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Development of a questionnaire to assess the patient perspective regarding challenges in psoriatic arthritis treatment—a mixed-methods study
by
Lubianca Kohem, Charles
,
Lucas Ribeiro, André
,
Esther Palominos, Penélope
in
Data collection
,
Disease
,
Ethics
2024
BackgroundLimited data exist on psoriatic arthritis (PsA) treatment in lower-income regions, particularly from the patient perspective. This study explores the challenges faced by socioeconomically vulnerable PsA patients and the reasons for non-adherence to treatment guidelines. The main objective of the study is to develop a questionnaire to identify the primary challenges in PsA treatment adherence and to analyze its feasibility while simultaneously understanding the target population’s unique characteristics.MethodsWe included PsA patients meeting the Classification Criteria for PsA (CASPAR), excluding those with other overlapping inflammatory diseases. The study, supported by two patient-research partners, began with focus groups to identify treatment challenges, leading to the creation of a 26-item questionnaire. Its reliability was verified using the test-retest method, targeting a percent agreement ≥ 0.8. Then, PsA patients at a rheumatology clinic completed the final survey.ResultsThe study involved 69 PsA patients. The final questionnaire contained 26-questions across five-domains, with a 92.2% agreement rate and an average completion time of 8.3 minutes. Diagnostic delays exceeded a year for 59% of patients and more than two years for 33%. Daily life disruptions affected 43.2% of patients, with 35.3% taking sick leave or retiring. Around 25% waited over 8 weeks for drug approval, and 17.6% required legal intervention to access medication. Drug dispensation issues impacted about 60% of patients. Furthermore, 66.7% lived far from their rheumatologist, with 49% traveling over an hour for appointments. Approximately 30% were unaware of the risks of methotrexatein relation to alcohol consumption and pregnancy.ConclusionsThe questionnaire was feasible and reliable, with its results underscoring patient-centric challenges in PsA management, particularly concerning diagnostic delays and medication access, as well as daily life disruptions and misinformation. These findings emphasize the urgency for healthcare reforms aimed at improving diagnosis efficiency, patient education, and streamlined medication access, emphasizing the need for tailored initiatives to improve the healthcare experience for PsA patients.
Journal Article
Different ethnic background is associated with distinct clinical profiles in the spondyloarthritides in the North and South of Brazil
by
Ana Paula Beckhauser de Campos
,
Sandra Lúcia Euzébio Ribeiro
,
Penélope Esther Palominos
in
Ankylosing spondylitis
,
Arthritis
,
C-reactive protein
2019
The objective of this study was to analyze the clinical profile of the spondyloarthritides (SpA) in distinct Brazilian regions. A common protocol of investigation was prospectively applied to 202 SpA patients, including 138 patients from the South and 64 patients from the North. All the patients were classified as axial or peripheral SpA. Clinical and demographic variables and disease indexes were analyzed. Bonferroni correction was used to adjust the level of significance of each test; results with p value < 0.003 were considered statistically relevant. White ethnicity was associated with positive HLA-B27, while non-Whites presented higher frequency of peripheral arthritis, although not statistically significant. When comparing non-White patients from the North with those from the South, the Southerners presented significantly higher scores of Ankylosing Spondylitis Disease Activity Score using C-reactive protein (p = 0.001) and Health Assessment Questionnaire (p = 0.001). Although not statistically significant, Northern non-White patients were more frequently males, while Southerners had higher frequency of anterior uveitis and higher Bath Ankylosing Spondylitis Disease Activity Index and Ankylosing Spondylitis Quality of Life. Brazilian SpA patients present distinct patterns of disease according to the geographic region, especially regarding the non-White populations.
Journal Article
Urinary soluble VCAM-1 is a useful biomarker of disease activity and treatment response in lupus nephritis
by
Marx, Romulo
,
Gasparin, Andrese Aline
,
Hax, Vanessa
in
Biomarkers
,
Biopsy
,
Clinical rheumatology
2020
Introduction
Vascular cell adhesion molecule-1 (VCAM-1) is involved in the progression of glomerular and tubulointerstitial injury in lupus nephritis (LN) and can be easily assessed in urine. The aim of this study was to assess urinary soluble VCAM-1 (uVCAM-1) as a biomarker of disease activity and treatment response in LN.
Methods
This prospective study enrolled 62 patients with class III, IV or V LN diagnosed within the last 3 years and divided them in two groups: with and without active nephritis at the inclusion, each group with 31 patients. At each visit, a urine sample was collected for uVCAM-1 evaluation and the nephritis status was assessed.
Results
Median uVCAM-1 level was elevated in patients with active compared to inactive LN (
P
< 0.001). The ROC curve of uVCAM-1 demonstrated an AUC of 0.84 and a cutoff of 47.2 ng/mgCr yielded a good sensitivity (74.2%) and specificity (74.2%) for the diagnosis of active LN. A significant correlation was found between uVCAM-1 level and renal activity scores and traditional biomarkers of LN. The level of uVCAM-1 dropped in patients with active LN who went into remission (
P
< 0.001), increased in patients who went into activity (
P
= 0.002) and did not change in patients who remained inactive (
P
= 0.797). The level of uVCAM-1 peaked during the flare of LN (
P
< 0.05).
Conclusion
The uVCAM-1 is a reliable biomarker that reflects renal disease activity and is useful for monitoring individual patients with lupus nephritis over time.
Journal Article
Treating psoriatic arthritis to target: discordance between physicians and patients’ assessment, non-adherence, and restricted access to drugs precluded therapy escalation in a real-world cohort
by
Nicole Pamplona Bueno de Andrade
,
Andrese, Aline Gasparin
,
Hax, Vanessa
in
Arthritis
,
Clinical trials
,
Discordance
2019
The treat-to-target strategy (T2T) was associated with better outcomes in psoriatic arthritis (PsA) compared to standard care in clinical trials. This study aimed to analyze factors precluding treatment optimization in a T2T strategy conducted in a real-world cohort of PsA patients. A retrospective cross-sectional study nested in a cohort was conducted. Medical records of patients ≥ 18 years old, fulfilling CASPAR criteria and with at least one visit in the PsA clinic, were reviewed. Demographic data, current medication, and minimal disease activity (MDA) criteria were recorded. Reasons for the non-escalation of therapy in patients who were not classified as MDA were reported as absolute and relative frequencies. In the 8-month period, 131 visits (corresponding to 74 patients) were conducted. The MDA criteria were available in 113 visits (86.3%) and patients were classified as MDA in 31.0% of the visits (N = 35/113). Although in 69.0% of the visits patients were not in MDA, (N = 78/113), therapy was adjusted in only 42.3% (N = 33/78). Reasons precluding treatment escalation in non-MDA subjects were physician’s impression of remission (57.7%, N = 26), non-adherence to previous prescription (17.8%, N = 8), restricted access to drugs (17.8%, N = 8), adverse events (11.1%, N = 5), poor understanding of medication instructions (6.7%, N = 3), patient’s refusal to escalate therapy (4.4%, N = 2), and recent change in therapy (2.2%, N = 1). Discordance between the physician’s clinical evaluation and the MDA criteria, non-adherence to prescription, and poor access to drugs were the main factors precluding escalation of therapy in a T2T strategy in a real-world PsA cohort.
Journal Article
Correlation of enthesitis indices with disease activity and function in axial and peripheral spondyloarthritis: a cross-sectional study comparing MASES, SPARCC and LEI
by
Saldanha, Carla
,
Aline Castello Branco Mancuso
,
Andrese, Aline Gasparin
in
Arthritis
,
Classification
,
Coexistence
2019
Background The presence of enthesitis is associated with higher disease activity, more disability and incapacity to work and a poorer quality of life in spondyloarthritis (SpA). There is currently no consensus on which clinical score should be used to assess enthesitis in SpA. The objective of the present work was to compare the correlation of three enthesitis indices (MASES, SPARCC and LEI) with measures of disease activity and function in a heterogeneous population of patients with axial and peripheral SpA. Methods A cross-sectional study was conducted in three Brazilian public university hospitals; patients fulfilling ASAS classification criteria for peripheral or axial SpA were recruited and measures of disease activity and function were collected and correlated to three enthesitis indices: MASES, SPARCC and LEI using Spearman’s Correlation index. ROC curves were used to determine if the the enthesitis indices were useful to discriminate patients with active disease from those with inactive disease. Results Two hundred four patients were included, 71.1% (N = 145) fulfilled ASAS criteria for axial SpA and 28.9% (N = 59) for peripheral SpA. In axial SpA, MASES performed better than LEI (p = 0.018) and equal to SPARCC (p = 0.212) regarding correlation with disease activity (BASDAI) and function (BASFI). In peripheral SpA, only MASES had a weak but statistical significant correlation with DAS28-ESR (rs 0.310 p = 0.05) and MASES had better correlation with functional measures (HAQ) than SPARCC (p = 0.034). Conclusion In this sample composed of SpA patients with high coexistence of axial and peripheral features, MASES showed statistical significant correlation with measures of disease activity and function in both axial and peripheral SpA.
Journal Article
Fears and beliefs of people living with rheumatoid arthritis: a systematic literature review
by
Nicole Pamplona Bueno de Andrade
,
Igansi, Fernanda
,
Andrese, Aline Gasparin
in
Clinical outcomes
,
Data collection
,
Disease
2018
Objective To assess the main fears and beliefs of people with rheumatoid arthritis (RA) and their effect on treatment outcomes; Methods A systematic literature review was conducted in Pubmed/Medline; original articles published up to May 2017, reporting fears and/or beliefs of adult patients with RA were analyzed. Fears and beliefs were collected by two independent researchers and grouped into categories. Results Among 474 references identified, 84 were analyzed, corresponding to 24,336 RA patients. Fears were reported in 38.4% of the articles (N = 32/84): most studies described fears related to pharmacological therapy (50.0%, N = 16/32) and fear of disability (28.1%, N = 9/32). Beliefs were reported in 88.0% of articles (N = 74/84) and were found to moderate the patient-perceived impact of RA in 44.6% (N = 33/74), mainly the emotional impact (18.9%, N = 14/74); measures of function, quality of life, fatigue and pain were also found to be affected by patients’ beliefs in 8.1% (N = 6/74), 6.8% (N = 5/74), 2.7% (N = 2/74) and 2.7% (N = 2/74) of the articles, respectively. Beliefs about therapy were linked to adherence in 17.6% of articles (N = 13/74) and beliefs about cause of RA predicted coping patterns in 12.2% of publications (N = 9/74). Only 9.5% (N = 8/84) of articles reported fears and/or beliefs of patients living outside Europe and North America: there was only one work which recruited patients in Latin America and no article included patients from Africa. Conclusion In RA, patients’ beliefs are linked to impact of disease and non-adherence. Further research is needed on fears/ beliefs of patients living outside Europe and North America.
Journal Article
Pan American League of Associations for Rheumatology recommendations for the management of axial spondyloarthritis
by
Burgos-Vargas, Ruben
,
Soriano, Enrique R
,
Quiceno, Guillermo Andrés
in
Arthritis
,
Axial skeleton
,
Drug development
2023
Axial spondyloarthritis (axSpA) comprises a spectrum of chronic inflammatory manifestations affecting the axial skeleton and represents a challenge for diagnosis and treatment. Our objective was to generate a set of evidence-based recommendations for the management of axSpA for physicians, health professionals, rheumatologists and policy decision makers in Pan American League of Associations for Rheumatology (PANLAR) countries. Grading of Recommendations, Assessment, Development and Evaluation-ADOLOPMENT methodology was used to adapt existing recommendations after performing an independent systematic search and synthesis of the literature to update the evidence. A working group consisting of rheumatologists, epidemiologists and patient representatives from countries within the Americas prioritized 13 topics relevant to the context of these countries for the management of axSpA. This Evidence-Based Guideline article reports 13 recommendations addressing therapeutic targets, the use of NSAIDs and glucocorticoids, treatment with DMARDs (including conventional synthetic, biologic and targeted synthetic DMARDs), therapeutic failure, optimization of the use of biologic DMARDs, the use of drugs for extra-musculoskeletal manifestations of axSpA, non-pharmacological interventions and the follow-up of patients with axSpA.This Evidence-Based Guideline presents the first Pan American League of Associations for Rheumatology recommendations for the management of axial spondyloarthritis, addressing therapeutic targets, the use of pharmacological and non-pharmacological interventions and monitoring of patients.
Journal Article
The effects of cultural background on patient-perceived impact of psoriatic arthritis - a qualitative study conducted in Brazil and France
by
Hinckel, César Luis
,
Ana Laura Didonet Moro
,
Ricardo Machado Xavier
in
Arthritis
,
Codes
,
Ethnicity
2018
Background In psoriatic arthritis (PsA) almost all qualitative studies have been performed in European populations. This work aimed to evaluate the impact of PsA in Brazilian and French subjects, as well as to explore cultural differences in the experience of disease and to recognize domains important for patients living with PsA outside Europe. Methods A qualitative study was conducted in two university hospitals in Brazil and France; outpatients fulfilling Classification Criteria for PsA participated in individual interviews regarding the impact of PsA; interviews were conducted in the local language. The sample size was defined by saturation; interviews were recorded and transcribed and content analysis was performed. Results Fifteen patients were interviewed in Brazil and 13 in France. Mean disease duration was 16.5 ± 12.5 years (range: 8 months to 47 years) and 14.4 ± 8.4 years (range 12 months to 29 years) for Brazilian and French subjects, respectively. A broad impact was perceived: 67 codes emerged from the interviews and were grouped in 41 categories. Although 2/3 of categories were common to both nationalities, some important health domains from the perspective of PsA patients from a non-European background were brought to light including sexual dysfunction, emotional impact of psoriasis and impact of prejudice on social and professional life. Conclusions This study highlights the importance of assessing the impact of PsA on a national level, emphasizing the common cross-cultural aspects but also revealing domains of interest for patients with PsA living outside Europe which merit further study.
Journal Article
Latent tuberculosis infection and tuberculosis in patients with rheumatic diseases treated with anti-tumor necrosis factor agents
by
Morsch, André Luis Bittencourt
,
Garziera, Giovana
,
Staub, Fernanda Luiza
in
Adult
,
Ankylosing spondylitis
,
Arthritis
2017
The introduction of biological agents, especially the tumor necrosis factor inhibitors (anti-TNF), for the treatment of rheumatic diseases increased the risk of developing tuberculosis (TB). Screening for latent TB infection (LTBI) is strongly recommended before starting therapy with anti-TNF agents. The objective of this study was to identify the prevalence of LTBI and TB among patients with rheumatic diseases on anti-TNF agents. This is a cross-sectional study. The electronic medical records of all adult patients (≥18 years old) undergoing anti-TNF treatment were reviewed. Every patient underwent tuberculin skin test (TST) before starting anti-TNF treatment. In total, 176 patients were included; the mean age was 51.9 ± 12.4 years, 34.7% were males, and 90.9% were white. The underlying diseases were rheumatoid arthritis (RA) in 50.6% (
N
= 89), ankylosing spondylitis (AS) in 27.8% (
N
= 49), and psoriatic arthritis (PsA) in 17.6% (
N
= 31). The prevalence of positive TST was 29.5%. Household contact with TB was significantly associated with a positive TST (
p
= 0.020). RA patients had lower TST reactions than AS patients (
p
= 0.022). There were six cases of TB (3.4%) diagnosed during anti-TNF therapy. We demonstrated a high prevalence of positive TST (29.5%) among patients with rheumatic diseases in a region with high TB prevalence. Our data corroborates the ACR’s recommendation that patients who live in high TB incidence settings should be tested annually for LTBI.
Journal Article
Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA): updated treatment recommendations for psoriatic arthritis 2021
2022
Since the second version of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) treatment recommendations were published in 2015, therapeutic options for psoriatic arthritis (PsA) have advanced considerably. This work reviews the literature since the previous recommendations (data published 2013–2020, including conference presentations between 2017 and 2020) and reports high-quality, evidence-based, domain-focused recommendations for medication selection in PsA developed by GRAPPA clinicians and patient research partners. The overarching principles for the management of adults with PsA were updated by consensus. Principles considering biosimilars and tapering of therapy were added, and the research agenda was revised. Literature searches covered treatments for the key domains of PsA: peripheral arthritis, axial disease, enthesitis, dactylitis, and skin and nail psoriasis; additional searches were performed for PsA-related conditions (uveitis and inflammatory bowel disease) and comorbidities. Individual subcommittees used a GRADE-informed approach, taking into account the quality of evidence for therapies, to generate recommendations for each of these domains, which were incorporated into an overall schema. Choice of therapy for an individual should ideally address all disease domains active in that patient, supporting shared decision-making. As safety issues often affect potential therapeutic choices, additional consideration was given to relevant comorbidities. These GRAPPA treatment recommendations provide up-to-date, evidence-based guidance on PsA management for clinicians and people with PsA.This Evidence-Based Guideline presents the latest treatment recommendations for medication selection in psoriatic arthritis (PsA), covering the six clinical domains of PsA, related conditions and associated comorbidities, and reflecting important advances in the field since the previous update.
Journal Article