| 1. |
- Arat, Seher, et al.
(författare)
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Development and preliminary evaluation of the validity and reliability of a revised illness perception questionnaire for healthcare professionals.
- 2016
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Ingår i: BMC nursing. - : Springer Science and Business Media LLC. - 1472-6955. ; 15
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Tidskriftsartikel (refereegranskat)abstract
- Diverging perceptions between individual patients with somatic diseases and their healthcare professionals might cause problems in communication and decision-making. To date, no measurement tool is available to compare the illness perceptions between these two groups. The Revised Illness Perception Questionnaire (IPQ-R) is a validated, widely used instrument in many patient populations with somatic conditions. The aim of this study was to adapt the IPQ-R to a healthcare professional's version (IPQ-R HP) and to perform a preliminary evaluation of its validity and reliability.
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| 2. |
- Arat, Seher, et al.
(författare)
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Diverging illness perceptions between physicians about patients with systemic lupus erythematosus and systemic sclerosis: a vignette-based study.
- 2017
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Ingår i: Rheumatology international. - : Springer Science and Business Media LLC. - 1437-160X .- 0172-8172. ; 37:6, s. 915-922
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Tidskriftsartikel (refereegranskat)abstract
- Systemic lupus erythematosus (SLE) and systemic sclerosis (SSc) are complex chronic auto-immune diseases characterized by multiple organ involvement, comorbidities, and complications. This complexity results in a need for a multidisciplinary management and treatment of SLE and SSc by physicians from a number of medical disciplines, all of who may have different perceptions concerning the condition of a particular patient. The aim of this study was to explore differences in physicians' perceptions on the illness of SLE and SSc patients. Physicians from nine disciplines working at three hospitals in Belgium completed illness perception questionnaires for healthcare professionals based on four patient vignettes, i.e., two vignettes per disease (SLE-SSc). Statistical analysis was carried out by a k-means clustering technique for clustering physicians according to their illness perceptions. Fifty physicians, 62% men with a mean age of 42.8 years (SD 11.3) and mean working experience of 12.7 years (SD 11.6), participated. For each disease, three clusters of physicians with different scores in illness perceptions were identified. For SLE, these clusters were specified as the 'optimistic' group, the 'realistic' group, and the 'overwhelming impact by disease' group. For SSc, the clusters were characterized as the 'optimistic' group, the 'realistic' group, and the 'skeptical' group. We found divergent illness perceptions across physicians of the same and other disciplines. Our study yielded three clusters of physicians per disease with a large variability in illness perceptions. Further studies should focus on the factors that determine these differences and their consequences for patient care.
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| 3. |
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| 4. |
- Arat, Seher, et al.
(författare)
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Illness representations of systemic lupus erythematosus and systemic sclerosis: a comparison of patients, their rheumatologists and their general practitioners.
- 2017
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Ingår i: Lupus science & medicine. - : BMJ. - 2053-8790. ; 4:1
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Tidskriftsartikel (refereegranskat)abstract
- Discrepancies in illness representations between patients and physicians result in treatment difficulties, decreased well-being of patients and misunderstandings and disrupted communication. Hence, the objective of this study was to compare illness perceptions of individual patients with systemic lupus erythematosus (SLE) and systemic sclerosis (SSc), their rheumatologists and their general practitioners (GPs) and explore potential differences.This study has a cross-sectional design. Patients with SLE and SSc, who were followed at the rheumatology department of the University Hospitals Leuven (Belgium), completed the revised Illness Perception Questionnaire which measures patients' perceptions of their condition and captures nine dimensions. Physicians completed the Revised Illness Perception Questionnaire for Healthcare Professionals which consists of seven dimensions and measures perceptions of the healthcare professional regarding the disease of their patients. Intraclass correlation was performed to examine relationships between pairs of respondents; Cohen's d was used for estimating the magnitude of the difference.Questionnaires were sent to 284 patients of whom 241 (113 SSc and 128 SLE patients) were included. Five rheumatologists and 160 GPs participated. For both diseases, positive correlations were found for 'consequences', 'illness coherence' and 'emotional representations' among patients, rheumatologists and GPs. GPs scored higher on the 'consequences' of these diseases for the patient (d=0.71 for SLE; d=0.80 for SSc). Differences between rheumatologists and GPs were small for SSc and moderate to large for 'consequences' (d=0.56) and 'timeline acute/chronic' (d=0.95) in SLE with higher scores for GPs.For both diseases and among the three groups, significant correlations are detected for the dimensions 'consequences', 'illness coherence' and 'emotional representations'. Differences between rheumatologists and GPs were mainly detected in the case of SLE patients. This can have implications for the collaboration between these two groups of physicians in daily clinical practice.NCT02655640; Pre-results.
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| 5. |
- Arat, Seher, et al.
(författare)
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Modifiable correlates of illness perceptions in adults with chronic somatic conditions: A systematic review.
- 2018
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Ingår i: Research in nursing & health. - : Wiley. - 1098-240X .- 0160-6891. ; 41:2, s. 173-184
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Tidskriftsartikel (refereegranskat)abstract
- When individuals become ill, they want to understand and give meaning to their illness. The interpretation of this illness experience, or illness perception, is influenced by a range of individual, contextual, and cultural factors. Some of these factors may be modifiable by nursing interventions. The purpose of this systematic review was to investigate which modifiable factors were correlated with illness perceptions across studies of adults with different chronic somatic diseases. Using search terms tailored to each of four electronic databases, studies retrieved were reviewed by two independent evaluators, and each relevant article was assessed for methodological quality. Results were standardized by calculating correlation coefficients. Fifteen papers on illness perceptions in a variety of chronic diseases met the inclusion criteria. All used standardized measures of illness perceptions. We identified five groups of modifiable correlates of illness perceptions: illness-related factors, psychosocial factors, medication beliefs, information provision and satisfaction with information received, and quality of care. Our findings add to the knowledge of modifiable factors correlated with illness perceptions, including the importance of illness-related factors and psychosocial factors such as anxiety and depression. Knowledge of these correlates can facilitate understanding of patients' illness perceptions and might be useful in tailoring patient education programs.
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| 6. |
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| 7. |
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| 8. |
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| 9. |
- Boonen, Annelies, et al.
(författare)
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EULAR Points to Consider (PtC) for designing, analysing and reporting of studies with work participation as an outcome domain in patients with inflammatory arthritis
- 2021
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Ingår i: Annals of the Rheumatic Diseases. - : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 80:9, s. 1116-1123
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Clinical studies with work participation (WP) as an outcome domain pose particular methodological challenges that hamper interpretation, comparison between studies and meta-analyses.OBJECTIVES: To develop Points to Consider (PtC) for design, analysis and reporting of studies of patients with inflammatory arthritis that include WP as a primary or secondary outcome domain.METHODS: The EULAR Standardised Operating Procedures were followed. A multidisciplinary taskforce with 22 experts including patients with rheumatic diseases, from 10 EULAR countries and Canada, identified methodologic areas of concern. Two systematic literature reviews (SLR) appraised the methodology across these areas. In parallel, two surveys among professional societies and experts outside the taskforce sought for additional methodological areas or existing conducting/reporting recommendations. The taskforce formulated the PtC after presentation of the SLRs and survey results, and discussion. Consensus was obtained through informal voting, with levels of agreement obtained anonymously.RESULTS: Two overarching principles and nine PtC were formulated. The taskforce recommends to align the work-related study objective to the design, duration, and outcome domains/measurement instruments of the study (PtC: 1-3); to identify contextual factors upfront and account for them in analyses (PtC: 4); to account for interdependence of different work outcome domains and for changes in work status over time (PtC: 5-7); to present results as means as well as proportions of patients reaching predefined meaningful categories (PtC: 8) and to explicitly report volumes of productivity loss when costs are an outcome (PtC:9).CONCLUSION: Adherence to these EULAR PtC will improve the methodological quality of studies evaluating WP.
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| 10. |
- Bossini-Castillo, Lara, et al.
(författare)
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A replication study confirms the association of TNFSF4 (OX40L) polymorphisms with systemic sclerosis in a large European cohort
- 2011
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Ingår i: Annals of the Rheumatic Diseases. - : BMJ. - 1468-2060 .- 0003-4967. ; 70:4, s. 638-641
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Tidskriftsartikel (refereegranskat)abstract
- Objectives The aim of this study was to confirm the influence of TNFSF4 polymorphisms on systemic sclerosis (SSc) susceptibility and phenotypic features. Methods A total of 8 European populations of Caucasian ancestry were included, comprising 3014 patients with SSc and 3125 healthy controls. Four genetic variants of TNFSF4 gene promoter (rs1234314, rs844644, rs844648 and rs12039904) were selected as genetic markers. Results A pooled analysis revealed the association of rs1234314 and rs12039904 polymorphisms with SSc (OR 1.15, 95% CI 1.02 to 1.31; OR 1.18, 95% CI 1.08 to 1.29, respectively). Significant association of the four tested variants with patients with limited cutaneous SSc (lcSSc) was revealed (rs1234314 OR 1.22, 95% CI 1.07 to 1.38; rs844644 OR 0.91, 95% CI 0.83 to 0.99; rs844648 OR 1.10, 95% CI 1.01 to 1.20 and rs12039904 OR 1.20, 95% CI 1.09 to 1.33). Association of rs1234314, rs844648 and rs12039904 minor alleles with patients positive for anti-centromere antibodies (ACA) remained significant (OR 1.23, 95% CI 1.10 to 1.37; OR 1.12, 95% CI 1.01 to 1.25; OR 1.22, 95% CI 1.07 to 1.38, respectively). Haplotype analysis confirmed a protective haplotype associated with SSc, lcSSc and ACA positive subgroups (OR 0.88, 95% CI 0.82 to 0.96; OR 0.88, 95% CI 0.80 to 0.96; OR 0.86, 95% CI 0.77 to 0.97, respectively) and revealed a new risk haplotype associated with the same groups of patients (OR 1.14, 95% CI 1.03 to 1.26; OR 1.20, 95% CI 1.08 to 1.35; OR 1.23, 95% CI 1.07 to 1.42, respectively). Conclusions The data confirm the influence of TNFSF4 polymorphisms in SSc genetic susceptibility, especially in subsets of patients positive for lcSSc and ACA.
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| 11. |
- Gorlova, Olga, et al.
(författare)
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Identification of Novel Genetic Markers Associated with Clinical Phenotypes of Systemic Sclerosis through a Genome-Wide Association Strategy
- 2011
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Ingår i: PLoS Genetics. - : Public Library of Science (PLoS). - 1553-7404. ; 7:7
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to determine, through a genome-wide association study (GWAS), the genetic components contributing to different clinical sub-phenotypes of systemic sclerosis (SSc). We considered limited (IcSSc) and diffuse (dcSSc) cutaneous involvement, and the relationships with presence of the SSc-specific auto-antibodies, anti-centromere (ACA), and anti-topoisomerase I (ATA). Four GWAS cohorts, comprising 2,296 SSc patients and 5,171 healthy controls, were meta-analyzed looking for associations in the selected subgroups. Eighteen polymorphisms were further tested in nine independent cohorts comprising an additional 3,175 SSc patients and 4,971 controls. Conditional analysis for associated SNPs in the HLA region was performed to explore their independent association in antibody subgroups. Overall analysis showed that non-HLA polymorphism rs11642873 in IRF8 gene to be associated at GWAS level with lcSSc (P = 2.32x10(-12), OR = 0.75). Also, rs12540874 in GRB10 gene (P = 1.27 x 10(-6), OR = 1.15) and rs11047102 in SOX5 gene (P = 1.39x10(-7), OR = 1.36) showed a suggestive association with lcSSc and ACA subgroups respectively. In the HLA region, we observed highly associated allelic combinations in the HLA-DQB1 locus with ACA (P = 1.79x10(-61), OR = 2.48), in the HLA-DPA1/B1 loci with ATA (P = 4.57x10(-76), OR = 8.84), and in NOTCH4 with ACA P = 8.84x10(-21), OR = 0.55) and ATA (P = 1.14x10(-8), OR = 0.54). We have identified three new non-HLA genes (IRF8, GRB10, and SOX5) associated with SSc clinical and autoantibody subgroups. Within the HLA region, HLA-DQB1, HLA-DPA1/B1, and NOTCH4 associations with SSc are likely confined to specific auto-antibodies. These data emphasize the differential genetic components of subphenotypes of SSc.
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| 12. |
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| 13. |
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| 14. |
- Kim, HoUng, et al.
(författare)
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The Future of Biosimilars : Maximizing Benefits Across Immune-Mediated Inflammatory Diseases
- 2020
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Ingår i: Drugs. - : Adis International. - 0012-6667 .- 1179-1950. ; 80:2, s. 99-113
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Tidskriftsartikel (refereegranskat)abstract
- Biologics have transformed the treatment of immune-mediated inflammatory diseases such as rheumatoid arthritis (RA) and inflammatory bowel disease (IBD). Biosimilars-biologic medicines with no clinically meaningful differences in safety or efficacy from licensed originators-can stimulate market competition and have the potential to expand patient access to biologics within the parameters of treatment recommendations. However, maximizing the benefits of biosimilars requires cooperation between multiple stakeholders. Regulators and developers should collaborate to ensure biosimilars reach patients rapidly without compromising stringent quality, safety, or efficacy standards. Pharmacoeconomic evaluations and payer policies should be updated following biosimilar market entry, minimizing the risk of imposing nonmedical barriers to biologic treatment. In RA, disparities between treatment guidelines and national reimbursement criteria could be addressed to ensure more uniform patient access to biologics and enable rheumatologists to effectively implement treat-to-target strategies. In IBD, the cost-effectiveness of biologic treatment earlier in the disease course is likely to improve when biosimilars are incorporated into pharmacoeconomic analyses. Patient understanding of biosimilars is crucial for treatment success and avoiding nocebo effects. Full understanding of biosimilars by physicians and carefully considered communication strategies can help support patients initiating or switching to biosimilars. Developers must operate efficiently to be sustainable, without undermining product quality, the reliability of the supply chain, or pharmacovigilance. Developers should also facilitate information sharing to meet the needs of other stakeholders. Such collaboration will help to ensure a sustainable future for both the biosimilar market and healthcare systems, supporting the availability of effective treatments for patients.
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| 15. |
- Oris, Leen, et al.
(författare)
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Illness Identity in Adults with a Chronic Illness.
- 2018
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Ingår i: Journal of clinical psychology in medical settings. - : Springer Science and Business Media LLC. - 1573-3572 .- 1068-9583. ; 25:4, s. 429-440
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Tidskriftsartikel (refereegranskat)abstract
- The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one's identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22-78year old; n=276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81year old; n=241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.
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| 16. |
- Parodis, Ioannis, 1981-, et al.
(författare)
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EULAR recommendations for the non-pharmacological management of systemic lupus erythematosus and systemic sclerosis
- 2024
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Ingår i: Annals of the Rheumatic Diseases. - : HighWire Press. - 0003-4967 .- 1468-2060. ; 83, s. 720-729
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To develop evidence-based recommendations for the non-pharmacological management of systemic lupus erythematosus (SLE) and systemic sclerosis (SSc).METHODS: A task force comprising 7 rheumatologists, 15 other healthcare professionals and 3 patients was established. Following a systematic literature review performed to inform the recommendations, statements were formulated, discussed during online meetings and graded based on risk of bias assessment, level of evidence (LoE) and strength of recommendation (SoR; scale A-D, A comprising consistent LoE 1 studies, D comprising LoE 4 or inconsistent studies), following the European Alliance of Associations for Rheumatology standard operating procedure. Level of agreement (LoA; scale 0-10, 0 denoting complete disagreement, 10 denoting complete agreement) was determined for each statement through online voting.RESULTS: Four overarching principles and 12 recommendations were developed. These concerned common and disease-specific aspects of non-pharmacological management. SoR ranged from A to D. The mean LoA with the overarching principles and recommendations ranged from 8.4 to 9.7. Briefly, non-pharmacological management of SLE and SSc should be tailored, person-centred and participatory. It is not intended to preclude but rather complement pharmacotherapy. Patients should be offered education and support for physical exercise, smoking cessation and avoidance of cold exposure. Photoprotection and psychosocial interventions are important for SLE patients, while mouth and hand exercises are important in SSc.CONCLUSIONS: The recommendations will guide healthcare professionals and patients towards a holistic and personalised management of SLE and SSc. Research and educational agendas were developed to address needs towards a higher evidence level, enhancement of clinician-patient communication and improved outcomes.
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| 17. |
- Radstake, Timothy R. D. J., et al.
(författare)
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Genome-wide association study of systemic sclerosis identifies CD247 as a new susceptibility locus
- 2010
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Ingår i: Nature Genetics. - : Springer Science and Business Media LLC. - 1546-1718 .- 1061-4036. ; 42:5, s. 71-426
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Tidskriftsartikel (refereegranskat)abstract
- Systemic sclerosis (SSc) is an autoimmune disease characterized by fibrosis of the skin and internal organs that leads to profound disability and premature death. To identify new SSc susceptibility loci, we conducted the first genome-wide association study in a population of European ancestry including a total of 2,296 individuals with SSc and 5,171 controls. Analysis of 279,621 autosomal SNPs followed by replication testing in an independent case-control set of European ancestry (2,753 individuals with SSc (cases) and 4,569 controls) identified a new susceptibility locus for systemic sclerosis at CD247 (1q22-23, rs2056626, P = 2.09 x 10(-7) in the discovery samples, P = 3.39 x 10(-9) in the combined analysis). Additionally, we confirm and firmly establish the role of the MHC (P = 2.31 x 10(-18)), IRF5 (P = 1.86 x 10(-13)) and STAT4 (P = 3.37 x 10(-9)) gene regions as SSc genetic risk factors.
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| 18. |
- Van der Elst, Kristien, et al.
(författare)
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European Qualitative Research Project on Patient-preferred Outcomes in Early Rheumatoid Arthritis (EQPERA) : Rationale, Design and Methods of a Multi-country, Multi-center, Multi-language, Longitudinal Qualitative Study
- 2017
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Ingår i: European Congress of Qualitative Inquiry. ; , s. 117-117
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Konferensbidrag (refereegranskat)abstract
- Background: A successful medical outcome is no guarantee for patient perception of treatment success. Unraveling the patient’s perspective on outcome preferences is therefore crucial to deliver patient-centered, high-quality chronic illness care. Furthermore, the earliest stage of a chronic disease, such as in Rheumatoid Arthritis (RA), can be considered as a critical phase in the patient pathway for achieving optimal long-term outcomes. A Belgian qualitative study provided a first glimpse on what matters most to patients with recently diagnosed RA (1). However, there was a need for an international data set to better understand this complex phenomenon being studied, and to investigate whether the Belgian findings could be transferred to contexts with different national healthcare systems, practices and values. To this end, EQPERA –European Qualitative research collaboration on Patient-preferred outcomes in Early Rheumatoid Arthritis– was founded.Objectives: The overall research objective of EQPERA is to unravel longitudinally preferences for treatment and health outcomes among patients with early RA across Belgium, the Netherlands, Sweden and Norway, placing findings in a context broader than Belgium. Furthermore, EQPERA aims to add to qualitative methodology research.Methods: EQPERA applies a qualitative, explorative, longitudinal research design, which was developed in collaboration with patient research partners and the patient perspective in mind. In each country, a purposive sample of patients with early RA will be individually interviewed between 3-6 months after start of the initial RA treatment and subsequently, the same participants will be invited to take part in a focus group about 1 year after RA treatment initiation. Interviews will be analyzed using the constant comparison method as described in Qualitative Analysis Guide of Leuven. The longitudinal analysis will be guided by Saldaña’s steps for analyzing change through time in longitudinal qualitative research. To study the multinational findings, we will carry out a meta-synthesis of all locally gathered and interpreted data. The local research teams will independently employ a qualitative study, while the project leader will monitor the research as it unfolds and evolves. Moreover, to support consistency in data collection and the inter-coder reliability across countries, we will implement a detailed research protocol, a structured cultural translation and validation process of the interview guides, data collection templates, a quality assurance reporting tool and specific training sessions.Added value: Our innovative, qualitative, longitudinal research design goes beyond the abilities of the frequently used cross-sectional designs in qualitative research. A European research context allows to uncover subtle cultural differences in patient-preferred outcomes across more or less similar organized countries. This project is thus a first step in gathering widely applicable findings in a research area where evidence-based knowledge is lacking, yet, highly needed to tailor care processes and optimize patient outcomes. Various data management strategies are applied to ensure quality and trustworthiness of our findings, and to promote a smooth European collaboration.
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| 19. |
- Van der Elst, Kristien, et al.
(författare)
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European Qualitative research project on Patient-preferred outcomes in Early Rheumatoid Arthritis (EQPERA) : rationale, design and methods of a multinational, multicentre, multilingual, longitudinal qualitative study
- 2019
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Ingår i: BMJ Open. - London, UK : BMJ Publishing Group Ltd. - 2044-6055. ; 9:3
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Including the patient perspective is important to achieve optimal outcomes in the treatment of rheumatoid arthritis (RA). Ample qualitative studies exist on patient outcomes in RA. A Belgian study recently unravelled what matters most to patients throughout the overwhelming and rapidly evolving early stage of RA. The present study, European Qualitative research project on Patient-preferred outcomes in Early Rheumatoid Arthritis (EQPERA) was created to contribute to a more universal understanding of patient-preferred health and treatment outcomes by integrating the perspectives of patients with early RA from three European countries.METHODS AND ANALYSIS: In EQPERA, a qualitative, explorative, longitudinal study will be implemented in The Netherlands and Sweden, parallel to the methods applied in the previously conducted Belgian study. In each country, a purposive sample of patients with early RA will be individually interviewed 3-6 months after start of the initial RA treatment and subsequently, the same participants will be invited to take part in a focus group 12-18 months after RA treatment initiation. Data collection and analysis will be independently conducted by the local research teams in their native language. A meta-analysis of the local findings will be performed to explore and describe similarities, differences and patterns across countries.ETHICS AND DISSEMINATION: Ethics approval was granted by the responsible local ethics committees. EQPERA follows the recommendations of the Declaration of Helsinki. Two main papers are foreseen (apart from the data reporting on the local findings) for peer-reviewed publication.© Author(s) (or their employer(s)) 2019.
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| 20. |
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| 21. |
- Van der Elst, Kristien, et al.
(författare)
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One in five patients with rapidly and persistently controlled early rheumatoid arthritis report poor well-being after 1 year of treatment.
- 2020
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Ingår i: RMD open. - : BMJ. - 2056-5933. ; 6:1
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Tidskriftsartikel (refereegranskat)abstract
- To identify and characterise a subgroup of patients with early rheumatoid arthritis (RA) reporting not feeling well 1 year after treatment initiation despite achieving optimal disease control according to current treatment standards.This observational study included participants of the Care in early RA trial with a rapid and sustained response (DAS28CRP<2.6) from week 16 until year 1 after starting the first RA treatment. Feeling well was assessed at year 1, using five patient-reported outcomes (PROs): pain, fatigue, physical functioning, RA-related quality of life and sleep quality. K-means clustering assigned patients to a cluster based on these PROs. Cohen's d effect size estimated cluster differences at treatment initiation and week 16, for the five clustering PROs, coping behaviour, illness perceptions and social support.Analyses revealed three clusters. Of 140 patients, 77.9% were assigned to the 'concordant to disease activity' cluster, 9.3% to the 'dominant fatigue' cluster and 12.9% to the 'dominant pain and fatigue' cluster. Large differences in pain and fatigue reporting were found at week 16 when comparing the 'concordant' with the 'dominant pain and fatigue' or the 'dominant fatigue' cluster. Small differences in reporting were found for the other PROs. Illness perceptions and coping style also differed in the 'concordant' cluster.Although most patients reported PRO scores in concordance with their well-controlled disease activity, one in five persistent treatment responders reported not feeling well at year 1. These patients reported higher pain and fatigue, and different illness perceptions and coping strategies early in the disease course.
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| 22. |
- Van der Elst, Kristien, et al.
(författare)
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Patient reported outcome data from the Care in Early Rheumatoid Arthritis trial: Opportunities for broadening the scope of treating to target.
- 2019
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Ingår i: Arthritis care & research. - : Wiley. - 2151-4658 .- 2151-464X. ; 71:12, s. 1566-1575
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Tidskriftsartikel (refereegranskat)abstract
- Treating early, intensively and to target leads to rapid disease control, preventing joint damage and loss of function in early rheumatoid arthritis (RA). We report the effect of such approach on patient-reported outcomes and explore the contribution of rapid and persistent disease control on wellbeing after 1 year of treatment.This study is part of the Care in early RA trial, a prospective, 2-year, investigator-initiated, randomized controlled trial rooted in daily practice and implementing the treat-to-target principle. SF-36 and IPQ-R data were collected prospectively. We defined 4 clinical response profiles based on speed and consistency of the treatment response within the first year, defined as DAS28CRP<2.6. Linear regression analyses including these response profiles and treatment type were constructed to predict SF-36 dimensions vitality, social functioning, role emotional, mental health, and IPQ-R illness perception subscales consequences, treatment control and illness coherence at year 1.333 patients were available for the main analyses, including 140 early persistent responders. Variation in each of the psychosocial outcomes at year 1 was explained mostly by their baseline values, followed by the clinical response profiles. Patients with an early persistent response reported significantly higher vitality, more positive beliefs about disease consequences and treatment effect. Treatment type did not matter.Rapid and persistent disease control and not treatment type was associated with favorable patient reported health and illness perceptions at year 1, but baseline psychosocial variables mattered most. Our data indicate opportunities to broaden the scope of the treat-to-target principle in early RA. This article is protected by copyright. All rights reserved.
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| 24. |
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| 25. |
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| 26. |
- Van der Elst, Kristien, et al.
(författare)
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What do patients prefer? A multinational, longitudinal, qualitative study on patient-preferred treatment outcomes in early rheumatoid arthritis
- 2020
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Ingår i: RMD Open. - London : BMJ Publishing Group Ltd. - 2056-5933. ; 6:2
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To explore treatment outcomes preferred by patients with early rheumatoid arthritis (RA) and how these change throughout the early disease stage across three European countries.METHODS: A longitudinal, qualitative, multicentre study was conducted in Belgium, the Netherlands and Sweden. 80 patients with early RA were individually interviewed 3-9 months after treatment initiation and 51 of them participated again in either a focus group or an individual interview 12-21 months after treatment initiation. Data were first analysed by country, following the Qualitative Analysis Guide of Leuven (QUAGOL). Thereafter, a meta-synthesis, inspired by the principles of meta-ethnography and the QUAGOL, was performed, involving the local research teams.RESULTS: The meta-synthesis revealed 11 subthemes from which four main themes were identified: disease control, physical performance, self-accomplishment and well-being. 'A normal life despite RA' was an overarching patient-preferred outcome across countries. Belgian, Dutch and Swedish patients showed many similarities in terms of which outcomes they preferred throughout the early stage of RA. Some outcome preferences (eg, relief of fatigue and no side effects) developed differently over time across countries.CONCLUSIONS: This study on patient-preferred outcomes in early RA revealed that patients essentially want to live a normal life despite RA. Our findings help to understand what really matters to patients and provide specific insights into the early stage of RA, which should be addressed by clinicians of different disciplines from the start of treatment onwards. © Author(s) (or their employer(s)) 2020.
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