518 results on '"de Thurah, Annette'
Search Results
2. Patients with axial spondyloarthritis reported willingness to use remote care and showed high adherence to electronic patient-reported outcome measures: an 18-month observational study
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Thomassen, Emil Eirik Kvernberg, Berg, Inger Jorid, Kristianslund, Eirik Klami, Tveter, Anne Therese, Bakland, Gunnstein, Gossec, Laure, Hakim, Sarah, Macfarlane, Gary John, de Thurah, Annette, and Østerås, Nina
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- 2024
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3. Significant others in inflammatory arthritis: roles, influences, and challenges—a scoping review
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Hansen, Charlotte Werdal, Nørgaard, Marianne Wetendorff, de Thurah, Annette, Midtgaard, Julie, Cromhout, Pernille Fevejle, and Esbensen, Bente Appel
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- 2024
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4. Sociodemographic and clinical variables associated with negative illness perception in patients newly diagnosed with rheumatoid arthritis, axial spondyloarthritis, or psoriatic arthritis—a survey based cross-sectional study
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Lindgren, Luise Holberg, de Thurah, Annette, Thomsen, Tanja, Hetland, Merete Lund, Aadahl, Mette, Vestergaard, Sofie Bech, Kristensen, Sara Danshøj, and Esbensen, Bente Appel
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- 2024
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5. Maintaining good mental health in people with inflammatory arthritis: a qualitative study of patients’ perspectives
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Signe Marie Abild, Julie Midtgaard, Annika Nordkamp, Annette de Thurah, Sofie Bech Vestergaard, Bente Glintborg, Mette Aadahl, Pernille Fevejle Cromhout, Lene Lau, Connie Yilmaz, and Bente Appel Esbensen
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mental health ,inflammatory arthritis ,qualitative studies ,disease management ,chronic illness ,Medicine (General) ,R5-920 - Abstract
Purpose It is well-documented that people with inflammatory arthritis (IA) exhibit a high prevalence of symptoms related to anxiety and depression. Less is known about what contributes to good mental health in people with IA. Therefore, this study aims to explore how some patients maintain good mental health despite living with IA. Methods Explorative qualitative interview study (one focus group, 12 individual interviews, n = 18) utilizing purposeful sampling. All interviews were audiotaped, transcribed, and managed using NVivo14 and employed a reflexive thematical analysis approach. Results We identified four main themes: 1) Assisted by a positive outlook on life—how participants’ inherent positivity helped them cope with arthritis; 2) Moving towards acceptance of life with arthritis—how participants embraced the reality of living with IA; 3) Counteracting letting arthritis dictate one’s life how the participants structured their lives in terms of physical activity and social connections; and 4) Taking responsibility for the trajectory—how the participants were mindful of their bodies and took the initiative to explore new treatments. Conclusion People living with IA maintain good mental health by engaging in structured physical activity, fostering social connections, and cultivating a positive outlook on life. These insights can inform the development of future treatment and support strategies.
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- 2024
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6. Face validity and reliability test of the Danish version of the compliance questionnaire rheumatology in patients with early rheumatoid arthritis
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Line Raunsbæk Knudsen and Annette de Thurah
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Adherence ,Compliance ,Rheumatic and Musculoskeletal Diseases ,Measurement properties ,Diseases of the musculoskeletal system ,RC925-935 - Abstract
Abstract Background Supporting adherence to medication is an essential part of the treatment and care of patients with rheumatic and musculoskeletal diseases. The Compliance Questionnaire Rheumatology (CQR) measures adherence in rheumatic diseases through 19 items covering drug-taking behaviour to identify the reasons for adhering to treatment and the factors that contribute to suboptimal adherence. The objective of this study was to present the translation of the CQR into Danish and the face validity and reliability test. Methods The CQR was translated into Danish according to international guidelines, followed by a face validity test among 10 patients with rheumatoid arthritis in 2009. The test–retest reliability of the Danish CQR was evaluated in 49 patients with rheumatoid arthritis in 2020 - 2021 using the standard error of the measurement (SEM) converted into the minimally detectable change (MDC) and the intraclass correlation coefficient (ICC). Questionnaires were administered with a minimum of 10 days between assessments. Results The participants in the reliability test had a mean age of 57.4 years (SD 16.1) and a mean disease duration of 1.13 years (range 2 months–2 years). The mean CQR score in the test and retest was 62.7 (confidence interval (CI) 58.8; 66.6) and 62.5 (CI 58.9; 66.1), respectively, with a SEM of 8.59 (7.16; 10.73) and an MDC of 16.83. A satisfactory test–retest reliability was confirmed by an ICC value of 0.79 (CI 0.68; 0.89). Conclusion The Danish CQR has satisfactory test–retest reliability in patients newly diagnosed with rheumatoid arthritis and is considered a reliable tool to measure adherence in this group.
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- 2023
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7. Synthesis of guidance available for assessing methodological quality and grading of evidence from qualitative research to inform clinical recommendations: a systematic literature review
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Heidi Lempp, Loreto Carmona, George E Fragoulis, Tanja A Stamm, Jan Schoones, Theodora P M Vliet Vlieland, Marios Kouloumas, Ricardo J O Ferreira, Elena Nikiphorou, Polina Pchelnikova, Lindsay Bearne, Annette de Thurah, Bente Appel Esbensen, Thijs Willem Swinnen, Mandeep Sekhon, and Chris Blunt
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Medicine - Abstract
Objective To understand (1) what guidance exists to assess the methodological quality of qualitative research; (2) what methods exist to grade levels of evidence from qualitative research to inform recommendations within European Alliance of Associations for Rheumatology (EULAR).Methods A systematic literature review was performed in multiple databases including PubMed/Medline, EMBASE, Web of Science, COCHRANE and PsycINFO, from inception to 23 October 2020. Eligible studies included primary articles and guideline documents available in English, describing the: (1) development; (2) application of validated tools (eg, checklists); (3) guidance on assessing methodological quality of qualitative research and (4) guidance on grading levels of qualitative evidence. A narrative synthesis was conducted to identify key similarities between included studies.Results Of 9073 records retrieved, 51 went through to full-manuscript review, with 15 selected for inclusion. Six articles described methodological tools to assess the quality of qualitative research. The tools evaluated research design, recruitment, ethical rigour, data collection and analysis. Seven articles described one approach, focusing on four key components to determine how much confidence to place in findings from systematic reviews of qualitative research. Two articles focused on grading levels of clinical recommendations based on qualitative evidence; one described a qualitative evidence hierarchy, and another a research pyramid.Conclusion There is a lack of consensus on the use of tools, checklists and approaches suitable for appraising the methodological quality of qualitative research and the grading of qualitative evidence to inform clinical practice. This work is expected to facilitate the inclusion of qualitative evidence in the process of developing recommendations at EULAR level.
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- 2024
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8. Remote Symptom Monitoring Using Patient-Reported Outcomes in Patients With Chronic Kidney Disease: Process Evaluation of a Randomized Controlled Trial
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Birgith Engelst Grove, Annette de Thurah, Per Ivarsen, Ann Katrine Kvisgaard, Niels Henrik Hjollund, Regine Grytnes, and Liv Marit Valen Schougaard
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Medicine - Abstract
BackgroundIn Denmark, outpatient follow-up for patients with chronic kidney disease (CKD) is changing from in-hospital visits toward more remote health care delivery. The nonuse of remote patient-reported outcomes (PROs) is a well-known challenge, and it can be difficult to explain which mechanisms of interventions influence the outcome. Process evaluation may, therefore, be used to answer important questions on how and why interventions work, aiming to enhance the implications for clinical practice. ObjectiveThis study aimed to provide insight into the intervention process by evaluating (1) the representativity of the study population, (2) patient and physician use patterns, (3) patient adherence to the intervention, and (4) clinical engagement. MethodsA process evaluation determining the reach, dose, fidelity, and clinical engagement was carried out, alongside a multicenter randomized controlled trial (RCT). We developed and implemented an intervention using PRO measures to monitor outpatients remotely. Data were collected for the PRO intervention arms in the RCT from 4 sources: (1) PRO data from the participants to determine personal factors, (2) the web-based PRO system to identify key usage intervention patterns, (3) medical records to identify clinical factors relating to the use of the intervention, and (4) semistructured interviews conducted with involved physicians. ResultsOf the 320 patients invited, 152 (47.5%) accepted to participate. The study population reflected the target population. The mean adherence rate to the PRO intervention arms was 82% (95% CI 76-87). The questionnaire response rate was 539/544 (99.1%). A minority of 13 (12.9%) of 101 patients needed assistance to complete study procedures. Physicians assessed 477/539 (88.5%) of the questionnaires. Contact was established in 417/539 (77.4%) of the cases, and 122/539 (22.6%) of the patients did not have contact. Physicians initiated 288/417 (69.1%) and patients requested 129/417 (30.9%) of all the contacts. The primary causes of contact were clinical data (242/417, 58%), PRO data (92/417, 22.1%), and medication concerns and precautionary reasons (83/417, 19.9%). Physicians found the use of PRO measures in remote follow-up beneficial for assessing the patient’s health. The inclusion of self-reported clinical data in the questionnaire motivated physicians to assess patient responses. However, some barriers were emphasized, such as loss of a personal relationship with the patient and the risk of missing important symptoms in the absence of a face-to-face assessment. ConclusionsThis study demonstrates the importance and practical use of remote monitoring among patients with CKD. Overall, the intervention was implemented as intended. We observed high patient adherence rates, and the physicians managed most questionnaires. Some physicians worried that distance from the patients made it unfeasible to use their “clinical glance,” posing a potential risk of overlooking crucial patients‘ symptoms. These findings underscore key considerations for the implementation of remote follow-up. Introducing a hybrid approach combining remote and face-to-face consultations may address these concerns. Trial RegistrationClinicalTrials.gov NCT03847766; https://clinicaltrials.gov/study/NCT03847766
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- 2024
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9. Patient-reported outcome (PRO) measurements in chronic and malignant diseases: ten years’ experience with PRO-algorithm-based patient-clinician interaction (telePRO) in AmbuFlex
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Hjollund, Niels Henrik I., Larsen, Louise Pape, de Thurah, Annette Ladefoged, Grove, Birgith Engelst, Skuladottir, Halla, Linnet, Hanne, Friis, Rasmus Blechingberg, Johnsen, Søren Paaske, May, Ole, Jensen, Annesofie Lunde, Hansen, Troels Krarup, Taarnhøj, Gry Assam, Tolstrup, Lærke Kjær, Pappot, Helle, Ivarsen, Per, Dørflinger, Liv, Jessen, Anne, Sørensen, Nanna Toxvig, Schougaard, Liv Marit Valen, and team, The AmbuFlex
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- 2023
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10. Prevalence of anxiety and depression and the association with self-management behaviour in >12 000 patients with inflammatory rheumatic disease: a cross-sectional nationwide study
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Bente Glintborg, Annette de Thurah, Bente Appel Esbensen, Sofie Bech Vestergaard, Julie Midtgaard Klausen, Lene Lau, Connie Yilmaz Jantzen, and Pernille Fevejle Cromhout
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Medicine - Abstract
Objective To investigate the prevalence of anxiety and depression among patients with inflammatory arthritis (IA) and evaluate the association of these mental health issues with self-management behaviour.Methods In this nationwide cross-sectional study, we analysed data from 12 713 adult Danish patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA) or spondyloarthritis (SpA). Patients received an electronic questionnaire covering sociodemographics, self-management behaviour and mental health status. Questionnaire data were linked to clinical data from the Danish Rheumatology database (DANBIO) and the Danish National Patient Registry. The prevalence of anxiety and depression (by the Hospital Anxiety and Depression Scale for Anxiety (HADS-A) and Depression (HADS-D)) was estimated separately for RA/PsA/SpA. The association between mental health status and low self-management behaviour (adherence to treatment, health activation and physical activity) was estimated using multivariable logistic regression, adjusting for age, sex, educational level and comorbidity.Results The prevalence of anxiety (HADS-A≥8) was highest for patients with SpA (34.5% (95% CI 32.4% to 36.6%)) and lowest for patients with RA (22.1% (95% CI 21.2% to 23.0%)), it was higher for women, younger (
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- 2024
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11. Follow-Up of Patients With Axial Spondyloarthritis in Specialist Health Care With Remote Monitoring and Self-Monitoring Compared With Regular Face-to-Face Follow-Up Visits (the ReMonit Study): Protocol for a Randomized, Controlled Open-Label Noninferiority Trial
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Inger Jorid Berg, Anne Therese Tveter, Gunnstein Bakland, Sarah Hakim, Eirik K Kristianslund, Siri Lillegraven, Gary J Macfarlane, Ellen Moholt, Sella A Provan, Joseph Sexton, Emil EK Thomassen, Annette De Thurah, Laure Gossec, Espen A Haavardsholm, and Nina Østerås
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Medicine ,Computer applications to medicine. Medical informatics ,R858-859.7 - Abstract
BackgroundPatients with chronic inflammatory joint diseases such as axial spondyloarthritis have traditionally received regular follow-up in specialist health care to maintain low disease activity. The follow-up has been organized as prescheduled face-to-face visits, which are time-consuming for both patients and health care professionals. Technology has enabled the remote monitoring of disease activity, allowing patients to self-monitor their disease and contact health care professionals when needed. Remote monitoring or self-monitoring may provide a more personalized follow-up, but there is limited research on how these follow-up strategies perform in maintaining low disease activity, patient satisfaction, safety, and cost-effectiveness. ObjectiveThe Remote Monitoring in Axial Spondyloarthritis (ReMonit) study aimed to assess the effectiveness of digital remote monitoring and self-monitoring in maintaining low disease activity in patients with axial spondyloarthritis. MethodsThe ReMonit study is a 3-armed, single-site, randomized, controlled, open-label noninferiority trial including patients with axial spondyloarthritis with low disease activity (Ankylosing Spondylitis Disease Activity Score
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- 2023
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12. Association of vocational interventions and work-related factors with disease and work outcomes in people with RMDs: A systematic review
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Wieczorek, Maud, Verstappen, Suzanne MM., Putrik, Polina, Gwinnutt, James M., Balanescu, Andra, Bischoff-Ferrari, Heike A., Boonen, Annelies, Cavalli, Giulio, de Souza, Savia, de Thurah, Annette, Dorner, Thomas E., Moe, Rikke Helene, Rodríguez-Carrio, Javier, Silva-Fernández, Lucía, Stamm, Tanja, Walker-Bone, Karen, Welling, Joep, Zlatković-Švenda, Mirjana, and Guillemin, Francis
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- 2023
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13. Design and development of an e-learning patient education program for self-management support in patients with rheumatoid arthritis
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Knudsen, Line Raunsbæk, Lomborg, Kirsten, and de Thurah, Annette
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- 2022
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14. Socioeconomic, Disease‐Related, and Personal Factors Associated With Participation in Remote Follow‐Up in Rheumatoid Arthritis: A Cross‐Sectional Study
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Schougaard, Liv M. V., Knudsen, Line R., Grove, Birgith E., Vestergaard, Jesper M., Hjollund, Niels H., Hauge, Ellen‐Margrethe, and de Thurah, Annette
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- 2023
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15. Concurrent baseline diagnosis of giant cell arteritis and polymyalgia rheumatica – A systematic review and meta-analysis
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Nielsen, Andreas Wiggers, Frølund, Line Lier, Våben, Christoffer, Bonde, Asta Roos, Gormsen, Lars Christian, de Thurah, Annette Ladefoged, Hauge, Ellen-Margrethe, and Keller, Kresten Krarup
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- 2022
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16. A nationwide study of ocular manifestations leading to hospital contacts among patients with giant cell arteritis
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Therkildsen, Philip, de Thurah, Annette, Faurschou, Mikkel, Baslund, Bo, Hansen, Ib Tønder, Nørgaard, Mette, Nielsen, Berit Dalsgaard, and Hauge, Ellen-Margrethe
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- 2022
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17. Outcome measures in rheumatology applied in self-management interventions targeting people with inflammatory Arthritis A systematic review of outcome domains and measurement instruments
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Hansen, Charlotte Werdal, Esbensen, Bente Appel, de Thurah, Annette, Christensen, Robin, de Wit, Maarten, and Cromhout, Pernille Fevejle
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- 2022
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18. A self-management intervention for newly diagnosed with inflammatory arthritis: a randomized controlled feasibility and fidelity study.
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Lindgren, Luise Holberg, Thomsen, Tanja, Hetland, Merete Lund, Aadahl, Mette, Kristensen, Sara Danshøj, de Thurah, Annette, and Esbensen, Bente Appel
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Background: Inflammatory arthritis affects approximately 2–3% of adults worldwide. For patients newly diagnosed with arthritis, effective self-management is crucial, as they often face several physiological, emotional, and social challenges. A self-management intervention called NISMA was thus developed to cater to this group. This study aimed to evaluate the feasibility and fidelity of this intervention before conducting a full-scale randomized controlled trial. Methods: This feasibility study was conducted as a single-center randomized controlled trial. Twenty participants were expected to be sufficient for assessing the feasibility outcomes. The control group received only the usual care, while the intervention group received the NISMA intervention in addition, which involved individual and group sessions in a multidisciplinary setting. Feasibility was evaluated based on the recruitment, data collection, retention, and randomization processes. The patient-reported outcome measures and clinical measures were collected to review their potential for inclusion in a future randomized controlled trial. Fidelity was assessed by using documentation sheets filled in by the health professionals and audio recordings of the sessions to examine whether the intervention's principles and components were adequately addressed. Results: Among 47 eligible patients, we recruited 23 participants during a period of 4 months. The recruitment rate was 47% and the retention rate 91%. Randomization, although accepted, led to some disappointment in the control group. Data collection was effective, with only minimal missing data (< 1%). The fidelity was considered as high, as results indicated that nurses effectively engaged in collaborative partnerships with patients, utilizing planned questioning techniques and self-management strategies for problem-solving and resource utilization. However, action planning was inconsistently applied. Conclusion: The study demonstrated the feasibility and the overall high fidelity of delivering the NISMA intervention to patients newly diagnosed with inflammatory arthritis. The insights from the study are useful for identifying the areas that require modifications before initiating a randomized controlled trial. Trial registration: ClinicalTrials.gov ID: NCT06063252. Registered 02 October 2023 — retrospectively registered. [ABSTRACT FROM AUTHOR]
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- 2025
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19. The one-year infection risk among patients diagnosed with giant cell arteritis: use of antibiotics and hospitalisations.
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Therkildsen, Philip, Thurah, Annette de, Nielsen, Berit Dalsgaard, Faurschou, Mikkel, Baslund, Bo, Hansen, Ib Tønder, Nørgaard, Mette, and Hauge, Ellen-Margrethe
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Objectives Patients with giant cell arteritis (GCA) primarily have their infections managed by primary care providers and hospitalisation is rarely necessary. Existing studies in GCA focus on infection-related hospitalisations only, whereas the use of antibiotic prescriptions is largely unknown. This study aims to examine the one-year overall infection risk among patients with GCA. Methods This nationwide observational cohort study included patients aged ≥50 years with a first-time GCA diagnosis in the Danish National Patient Registry (1996–2022). Patients with GCA were matched 1:10 by sex and date of birth with general population individuals and followed from date of diagnosis. Overall infections were defined as redeemed antibiotic prescriptions or infection-related hospitalisations. Utilising a pseudo-observation approach, we assessed 1-year cumulative incidence proportions (CIP), risk differences (RD) and relative risks (RR) of infections. Results The study included 17 773 incident patients with GCA and 177 730 reference individuals. Patients with GCA had a 1-year CIP of 52.4% (95% CI: 51.7–53.2) for overall infections and 17.6% (95% CI: 17.1–18.2) for infection-related hospitalisations. Compared with the reference cohort, patients with GCA had a RR of 1.40 (95% CI: 1.38–1.42) for overall infections and 2.71 (95% CI: 2.61–2.82) for infection-related hospitalisations. Additionally, higher cumulative glucocorticoid doses, advanced age (≥70 years) and higher comorbidity were associated with an increased risk of infections among patients with GCA. Conclusions The use of antibiotic prescriptions and infection-related hospitalisations in the first year after a GCA diagnosis is high compared with the background population. The cumulative glucocorticoid dose is associated with the infection risk. [ABSTRACT FROM AUTHOR]
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- 2025
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20. Maintaining good mental health in people with inflammatory arthritis: a qualitative study of patients' perspectives.
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Abild, Signe Marie, Midtgaard, Julie, Nordkamp, Annika, de Thurah, Annette, Vestergaard, Sofie Bech, Glintborg, Bente, Aadahl, Mette, Cromhout, Pernille Fevejle, Lau, Lene, Yilmaz, Connie, and Esbensen, Bente Appel
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CROSS-sectional method ,MENTAL health ,QUALITATIVE research ,FOCUS groups ,RESEARCH funding ,RHEUMATOID arthritis ,INTERVIEWING ,ANXIETY ,JUDGMENT sampling ,LONGITUDINAL method ,RESEARCH ,PSYCHOLOGICAL tests ,MENTAL depression ,PATIENTS' attitudes - Abstract
Purpose: It is well-documented that people with inflammatory arthritis (IA) exhibit a high prevalence of symptoms related to anxiety and depression. Less is known about what contributes to good mental health in people with IA. Therefore, this study aims to explore how some patients maintain good mental health despite living with IA. Methods: Explorative qualitative interview study (one focus group, 12 individual interviews, n = 18) utilizing purposeful sampling. All interviews were audiotaped, transcribed, and managed using NVivo14 and employed a reflexive thematical analysis approach. Results: We identified four main themes: 1) Assisted by a positive outlook on life—how participants' inherent positivity helped them cope with arthritis; 2) Moving towards acceptance of life with arthritis—how participants embraced the reality of living with IA; 3) Counteracting letting arthritis dictate one's life how the participants structured their lives in terms of physical activity and social connections; and 4) Taking responsibility for the trajectory—how the participants were mindful of their bodies and took the initiative to explore new treatments. Conclusion: People living with IA maintain good mental health by engaging in structured physical activity, fostering social connections, and cultivating a positive outlook on life. These insights can inform the development of future treatment and support strategies. [ABSTRACT FROM AUTHOR]
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- 2024
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21. Preventing medication nonadherence: a framework for interventions to support early engagement with treatment.
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Chapman, Sarah, Frostholm, Lisbeth, Chalder, Trudie, Graham, Christopher, de Thurah, Annette, van Leeuwen, Tess, Pedersen, Majbritt Mostrup, Carstensen, Tina, and Weinman, John
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PATIENT compliance ,PATIENT education ,HEALTH attitudes ,PATIENT-professional relations ,DRUGS ,SOCIAL support ,HEALTH promotion ,PATIENT participation - Abstract
Medication nonadherence is common and results in avoidable morbidity, mortality, and burdens on healthcare systems. This paper proposes a preventative approach to medication nonadherence. We consider existing evidence on the prevalence and determinants of nonadherence early in a patient's medication-taking journey, and map these to potential opportunities for intervention. Many patients stop taking a new medication soon after they are prescribed it, often not collecting the medication. Early patterns of nonadherence are linked to later nonadherence via processes such as habit formation and symptom experiences. Known predictors of nonadherence may be present before someone starts a new treatment, when patients experience disruption to their lives and identity due to illness. Healthcare professionals typically have contact with patients around this time. We argue that it may be possible to prevent medication nonadherence: at the population level; by optimising the prescription process; and through low- and high-intensity interventions for patients with identified early barriers. We give examples of specific interventions and tools that might be needed to operationalise this approach in practice and propose new directions for research to promote early engagement with medication to prevent nonadherence. [ABSTRACT FROM AUTHOR]
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- 2024
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22. Educational readiness among health professionals in rheumatology: low awareness of EULAR offerings and unfamiliarity with the course content as major barriers—results of a EULAR-funded European survey
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George E Fragoulis, Polina Putrik, Anne-Kathrin Rausch Osthoff, Theodora P M Vliet Vlieland, Jette Primdahl, Heidi A Zangi, Carina Boström, Ricardo J O Ferreira, Marja Leena Kukkurainen, Mwidimi Ndosi, Hana Smucrova, Jenny de la Torre-Aboki, Polina Pchelnikova, Valentin Ritschl, Marco Testa, Annette de Thurah, Erika Mosor, Razvan Gabriel Dragoi, Fernando Estévez-López, Olena Zimba, Rikke Helene Moe, Andréa Marques, Ellen Moholt, Mathilda Björk, Leti van Bodegom-Vos, Jorit Meesters, Andrea Domján, Lisa Sperl, Margaret Renn Andrews, Jeannette Cappon, Thomas Davergne, Jolanta Grygielska, Katti Kõrve, Christel Madelaine-Bonjour, Claudia Naimer-Stach, and Wilfred F Peter
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Medicine - Abstract
Background Ongoing education of health professionals in rheumatology (HPR) is critical for high-quality care. An essential factor is education readiness and a high quality of educational offerings. We explored which factors contributed to education readiness and investigated currently offered postgraduate education, including the European Alliance of Associations for Rheumatology (EULAR) offerings.Methods and participants We developed an online questionnaire, translated it into 24 languages and distributed it in 30 European countries. We used natural language processing and the Latent Dirichlet Allocation to analyse the qualitative experiences of the participants as well as descriptive statistics and multiple logistic regression to determine factors influencing postgraduate educational readiness. Reporting followed the Checklist for Reporting Results of Internet E-Surveys guideline.Results The questionnaire was accessed 3589 times, and 667 complete responses from 34 European countries were recorded. The highest educational needs were ‘professional development’, ‘prevention and lifestyle intervention’. Older age, more working experience in rheumatology and higher education levels were positively associated with higher postgraduate educational readiness. While more than half of the HPR were familiar with EULAR as an association and the respondents reported an increased interest in the content of the educational offerings, the courses and the annual congress were poorly attended due to a lack of awareness, comparatively high costs and language barriers.Conclusions To promote the uptake of EULAR educational offerings, attention is needed to increase awareness among national organisations, offer accessible participation costs, and address language barriers.
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- 2023
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23. POS1516 HEALTHCARE UTILIZATION IN GENERAL PRACTICE AND HOSPITALS PRECEDING A DIAGNOSIS OF SYSTEMIC SCLEROSIS: A NATIONWIDE DANISH REGISTRY STUDY.
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Juul Praastrup, Fie, primary, De Thurah, Annette, additional, Rasmussen, Linda A, additional, Naeser, Esben, additional, and Hauge, Ellen-Margrethe, additional
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- 2024
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24. The effectiveness of e-learning in patient education delivered to patients with rheumatoid arthritis: The WebRA study—protocol for a pragmatic randomised controlled trial
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Line Raunsbæk Knudsen, Kirsten Lomborg, Mwidimi Ndosi, Ellen-Margrethe Hauge, and Annette de Thurah
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Rheumatoid arthritis ,Patient education ,Web-based patient education ,e-learning ,Self-management ,Randomised controlled trial ,Diseases of the musculoskeletal system ,RC925-935 - Abstract
Abstract Background Patient education is integral to the treatment and care of patients with rheumatoid arthritis. Change is taking place in the organisation of healthcare systems because of a demographic shift towards ageing populations, an increasing use of technology and advancements in digital technologies, allowing for new interventions. This study will aim to evaluate the effectiveness of a newly developed e-learning patient education programme based on self-management that targets patients with rheumatoid arthritis. Methods A pragmatic multi-centre randomised controlled trial is planned. We intend to recruit approximately 200 patients with a new diagnosis (
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- 2021
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25. Remote follow-up based on patient-reported outcomes in patients with chronic kidney disease: A qualitative study of patient perspectives.
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Birgith Engelst Grove, Liv Marit Valen Schougaard, Per Ivarsen, Niels Henrik Hjollund, Annette de Thurah, and Caroline Trillingsgaard Mejdahl
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Medicine ,Science - Abstract
BackgroundPatient-reported outcomes (PROs) are increasingly used in outpatient follow-up. PRO-based remote follow-up offers a new healthcare delivery model, where PROs are used as the basis for outpatient follow-up in patients with chronic kidney disease. However, the patient's perspective of this novel remote care delivery remains unknown.ObjectivesThis study aimed to explore the patients' experiences using PROs in remote care and how this mode of follow-up may enhance patient engagement.DesignA qualitative approach was employed, guided by Focused Ethnography and Interpretive Description.ParticipantsPurposively, 15 patients with chronic kidney disease experienced with PRO-based remote follow-up in 3 renal outpatient clinics in the Central Denmark Region, were recruited.MeasuresField studies comprising participant observation in remote PRO consultations and individual, semi-structured interviews with the patients constituted the empirical data. Thematic analysis was performed according to Braun and Clarke's six-phase process.ResultsPRO-based remote follow-up may enhance patient engagement by a) improving communication, b) increasing disease knowledge, c) inducing flexibility, d) ensuring clinician feedback on PRO data, and e) prompting clinical action. Barriers to enhanced patient engagement were identified as a) lack of feedback on PRO data, b) lower disease knowledge, c) PRO in competition with biomedical data, and d) loss of personal relation.ConclusionPRO-based follow-up in remote care holds several advantages for the patients. However, some barriers need clinical awareness before PROs may enhance the patients' engagement in remote follow-up. Future studies should explore the impact of involving relatives in PRO-based follow-up.
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- 2023
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26. Sociodemographic, personal, and disease-related determinants of referral to patient-reported outcome-based follow-up of remote outpatients : a prospective cohort study
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Schougaard, Liv Marit Valen, de Thurah, Annette, Christensen, Jakob, Lomborg, Kirsten, Maindal, Helle Terkildsen, Mejdahl, Caroline Trillingsgaard, Vestergaard, Jesper Medom, Winding, Trine Nøhr, Biering, Karin, and Hjollund, Niels Henrik
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- 2020
27. Measures used to assess interventions for increasing patient involvement in Danish healthcare setting: a rapid review
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Camilla Palmhøj Nielsen, Mette Terp Hoybye, Annette de Thurah, Hilary Bekker, Liv Marit Valen Schougaard, Mette Spliid Ludvigsen, Bente Skovsby Toft, Lotte Rodkjaer, Anne Bendix Andersen, Berit Nielsen, Jens Thusgård Hørlück, Lisbeth Kallestrup, and Trine Ellegaard
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Medicine - Abstract
Objective To identify measures used within Denmark evaluating any type of intervention designed to facilitate patient involvement in healthcare.Design Environmental scan employing rapid review methods.Data sources MEDLINE, PsycInfo and CINAHL were searched from 6–9 April 2021 from database inception up to the date of the search.Eligibility criteria Quantitative, observational and mixed methods studies with empirical data on outcomes used to assess any type of intervention aiming to increase patient involvement with their healthcare. Language limitations were Danish and English.Data extraction and synthesis Two independent reviewers extracted data from 10% of the included studies and, due to their agreement, the data from the rest were extracted by first author. Data were analysed with reference to existing categories of measuring person-centred care; findings were synthesised using narrative summaries. Adapted Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidelines were used to guide reporting.Results Among 3767 records, 43 studies met the inclusion criteria, including 74 different measures used to evaluate interventions aimed at increasing patient involvement within healthcare in Danish hospital and community settings. Generic measures assessed: patient engagement (n=3); supporting self-management (n=8); supporting shared decision-making (n=9); patient satisfaction and experiences of care (n=11); health-related patient-reported outcome (n=20).Conclusions Across Denmark, complex interventions designed to improve patient involvement with healthcare vary in their goals and content. Some targeting healthcare professionals, some patient health literacy and some service infrastructure. A plethora of measures assess the impact of these interventions on patient, professional and service delivery outcomes. Few measures assessed patient involvement directly, and it is unclear which proxy measures capture indicators of perceived involvement. Lack of conceptual clarity between intervention goals, the components of change and measures makes it difficult to see what types of intervention can best support change in services to ensure patients are more effectively involved in their healthcare.
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- 2022
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28. Patient-reported outcome measures for clinical decision-making in outpatient follow-up: validity and reliability of a renal disease questionnaire
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Birgith Engelst Grove, Liv Marit Valen Schougaard, Per Ramløv Ivarsen, Derek Kyte, Niels Henrik Hjollund, and Annette de Thurah
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Renal insufficiency ,Ambulatory care ,Patient reported outcome measures ,Reproducibility of results ,Public aspects of medicine ,RA1-1270 - Abstract
Abstract Background Patient-reported outcome measures are increasingly used by clinicians to support communication in telephone- or face-to-face consultations with patients. A renal disease questionnaire has been developed, but not sufficiently evaluated through clinimetrics in clinical setting. Hence, we aimed to evaluate the content validity, construct validity and the test–retest reliability of a renal disease questionnaire to be used for clinical decision-making. Methods A content, construct validity and test–retest reliability study was conducted in 3 nephrology outpatient clinics in Central Denmark Region, Denmark. Content validity (face validity, comprehensibility and relevance) was assessed among 8 patients and 6 clinicians. Reliability was assessed by asking outpatients with chronic kidney disease to complete the questionnaire twice. Reliability was assessed by kappa statistics and agreement by percentage. Construct validity was determined using 4 a priori defined hypotheses and comparing 2 known groups. Results Five new domains emerged, 6 items were rephrased and 3 items were removed following the content validity test. A total of 160 patients completed the questionnaire with median 8 days (IQR 2 days) between assessments. The test–retest reliability parameters of the single items in the questionnaire were substantial to almost perfect as all the observed weighted kappa values ranged from 0.61 to 0.91, 95% CI (0.34 to 0.95). In total, 61% of the single items showed almost perfect agreement. In total, 3 of the 4 hypotheses were accepted and 44% of the items showed satisfying known-group discriminative validity. Conclusion A renal disease questionnaire used for clinical decision-making in outpatient follow-up showed acceptable content validity and substantial to almost perfect reliability. Sufficient construct validity was not established. Incorporating the questionnaire into routine clinical practice may improve the evaluation of disease burden in patients with chronic kidney disease. Plain English summary We ask patients with chronic kidney disease (CKD) in Central Region Denmark to complete a questionnaire before each outpatient visit. The answers they provide are used to support communication with their health care provider. A questionnaire requires testing to ensure it can accurately capture important information about patient’s symptoms and quality of life. When questionnaires are used to support communication between patients and health care professionals, they need to have good measurement properties. This means they need to be: (1) trustworthy, (2) relevant to a patient’s health condition, (3) consistent and produce stable results every time. We explored the measurement properties of a questionnaire designed to be used in the face-to face outpatient visits for patients with CKD. We found that the questionnaire captured consistent and stable results. Using this questionnaire may help health care professionals to assess the patients´ burden of symptoms with a more patient-centered approach. Potentially, the use of the questionnaire will increase the patients´ ability to cope with their symptoms and strengthen patients´ involvement in the clinical decisions concerning their treatment.
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- 2021
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29. Giant cell arteritis: A nationwide, population-based cohort study on incidence, diagnostic imaging, and glucocorticoid treatment
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Therkildsen, Philip, de Thurah, Annette, Hansen, Ib Tønder, Nørgaard, Mette, Nielsen, Berit Dalsgaard, and Hauge, Ellen-Margrethe
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- 2021
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30. Effectiveness of a novel digital patient education programme to support self-management of early rheumatoid arthritis: a randomized controlled trial.
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Knudsen, Line R, Ndosi, Mwidimi, Hauge, Ellen-Margrethe, Lomborg, Kirsten, Dreyer, Lene, Aaboe, Sidsel, Kjær, Marie B, Sørensen, Lis, Volsmann, Lena, Christensen, Heidi M, and Thurah, Annette de
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RHEUMATOID arthritis diagnosis ,PATIENT education ,HEALTH literacy ,SELF-management (Psychology) ,SELF-efficacy ,RESEARCH funding ,EVALUATION of human services programs ,EDUCATIONAL outcomes ,STATISTICAL sampling ,LOGISTIC regression analysis ,RANDOMIZED controlled trials ,MANN Whitney U Test ,DESCRIPTIVE statistics ,ODDS ratio ,QUALITY of life ,ANALYSIS of variance ,CONFIDENCE intervals ,DATA analysis software - Abstract
Objectives To evaluate the effectiveness of a novel digital patient education (PE) programme in improving self-management in patients newly diagnosed with rheumatoid arthritis (RA). Methods This was a parallel, open-label, two-armed, randomized controlled trial with superiority design. Patients from five rheumatology clinics were randomized into digital PE (intervention) or face-to-face PE (control). The primary outcome was self-efficacy, measured by average difference in the Rheumatoid Arthritis Self‐Efficacy (RASE) score from baseline to month 12. Secondary outcomes were RA knowledge, health literacy, adherence and quality of life. Healthcare utilization data and digital PE programme usage were recorded. Self-efficacy, knowledge and health literacy data were analysed using mixed-effects repeated measures modelling; adherence using logistic regression, and quality of life and healthcare utilization using descriptive statistics with the Wilcoxon rank-sum test. Results Of the 180 patients randomized (digital PE, n = 89; face-to-face PE, n = 91), 175 had data available for analysis. Median age was 59.0 years and 61% were women. The average difference in self-efficacy between groups from baseline to month 12 was significant by a −4.34 difference in RASE score, favouring the intervention group (95% CI: −8.17 to −0.51; P = 0.026). RA knowledge, health literacy and quality of life showed minor improvements over time but no difference between groups, except out-patient clinic contacts, which were fewer in the intervention group. Conclusion The findings suggest that digital PE is effective in improving self-efficacy and therefore self-management in patients with early RA. This intervention has potential to lower healthcare costs by decreasing out-patient clinic contacts. Trial registration number clinicaltrials.gov , NCT04669340. [ABSTRACT FROM AUTHOR]
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- 2024
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31. Facilitators and barriers in diagnosing rheumatoid arthritis as described by general practitioners: a Danish study based on focus group interviews
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Anne Sofie Baymler Lundberg, Bente Appel Esbensen, Martin Bach Jensen, Ellen Margrethe Hauge, and Annette de Thurah
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rheumatoid arthritis ,primary health care ,focus group interviews ,early diagnosis ,patient delay ,Public aspects of medicine ,RA1-1270 - Abstract
Objective To explore the perspectives of general practitioners (GPs) on facilitators and barriers in diagnosing rheumatoid arthritis (RA). Design Qualitative study based on focus group interviews, and using latent thematic analysis. Setting General practices from Central Region Denmark. Subjects Eleven GPs participated in three different focus groups. Forty percent were female, the mean age was 53 years (range 37–64), and the mean since medical licensing was 16 years (range 5–23). Sixty percent of the GPs worked in an area served by a university hospital, and 40% were served by a regional hospital. Main outcome measure Themes describing experiences and reflections about facilitators and barriers in diagnosing Rheumatoid Arthritis. Results Four themes emerged: (A) If the patient is not a textbook example, (B) The importance of maintaining the gatekeeper function, (C) Difficulties in referral of patients to the rheumatologist, and (D) Laboratory tests—can they be trusted? Barriers were identified in all themes, but facilitators only in A, C, and D. The overarching theme was Like finding a needle in a haystack. Conclusion The GPs found several barriers for diagnosing RA (symptom awareness, GP’s gatekeeper function, suboptimal collaboration with rheumatologists and limitations in laboratory tests). They identified education, more specific tests and better access to rheumatologists as possible facilitators for diagnosing RA. To facilitate earlier referral of suspected RA in general practice and strengthen mutual information and collaboration, future research should focus on these facilitators and barriers.Keypoints Early diagnosis is essential for the prognosis of RA, and the diagnostic process begins in general practice. Suggested facilitators: training courses in interpretation of laboratory tests and the clinical manifestation of RA, and videos on joint examinations. Suggested barriers: compliance with the gatekeeper function, suboptimal collaboration with rheumatologists, limitations of laboratory tests, and diversity of clinical manifestations.
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- 2021
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32. Effects of diet on the outcomes of rheumatic and musculoskeletal diseases (RMDs): systematic review and meta-analyses informing the 2021 EULAR recommendations for lifestyle improvements in people with RMDs
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Annelies Boonen, Francis Guillemin, Heike A Bischoff-Ferrari, Polina Putrik, Karen Walker-Bone, Andra Balanescu, Joep Welling, Suzanne M M Verstappen, Giulio Cavalli, Annette de Thurah, Javier Rodríguez-Carrio, Rikke Helene Moe, Tanja Stamm, Lucía Silva-Fernández, James M Gwinnutt, Thomas E Dorner, Maud Wieczorek, Savia de Souza, and Mirjana Zlatković-Švenda
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Medicine - Published
- 2022
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33. High-quality RMD rehabilitation and telehealth: Evidence and clinical practice
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de Thurah, Annette, Bremander, Ann, and Primdahl, Jette
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- 2020
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34. Definition and construct validation of clinically relevant cutoffs on the Flare Assessment in Rheumatoid Arthritis (FLARE-RA) questionnaire
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Myasoedova, Elena, De Thurah, Annette, Erpelding, Marie-Line, Schneeberger, Emilce E., Maribo, Thomas, Citera, Gustavo, Davis, John M., Matteson, Eric L., Crowson, Cynthia S., Fautrel, Bruno, and Guillemin, Francis
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- 2020
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35. Remote Symptom Monitoring Using Patient-Reported Outcomes in Patients With Chronic Kidney Disease: Process Evaluation of a Randomized Controlled Trial
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Grove, Birgith Engelst, primary, de Thurah, Annette, additional, Ivarsen, Per, additional, Kvisgaard, Ann Katrine, additional, Hjollund, Niels Henrik, additional, Grytnes, Regine, additional, and Schougaard, Liv Marit Valen, additional
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- 2024
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36. Self-administration of medication during hospitalization—a randomized pilot study
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Charlotte Arp Sørensen, Charlotte Olesen, Marianne Lisby, Ulrika Enemark, and Annette de Thurah
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Medication error ,Clinical safety ,Patient involvement ,Feasibility ,Self-administration ,Self-management ,Medicine (General) ,R5-920 - Abstract
Abstract Background Self-administration of medication (SAM) during hospitalization is a complex intervention where patients are involved in their course of treatment. The study aim was to pilot test the SAM intervention. The objectives were to assess the feasibility of conducting a randomized controlled trial on the safety and cost-consequences of SAM during hospitalization. Methods The study was performed in a Danish cardiology unit. Patients ≥ 18 years capable of self-administering medication during hospitalization were eligible. Patients were excluded if they did not self-administer medication at home, were incapable of self-administering medication, were not prescribed medication suitable for self-administration, did not bring their medication, or were unable to speak Danish. Feasibility was assessed as part of the pilot study. A future randomized controlled trial was considered feasible if it was possible to recruit 60 patients within 3 months, if outcome measurement method was capable of detecting dispensing errors in both groups, and if patients in the intervention group were more satisfied with the medication management during hospitalization compared to the control group. Forty patients were recruited to gain experience about the intervention (self-administration). Additionally, 20 patients were randomized to the intervention or control group (nurse-led dispensing) to gain experience about the randomization procedure. Dispensing error proportions were based on data collected through disguised observation of patients and nurses during dispensing. The error proportion in the control group was used for the sample size calculation. Patient acceptability was assessed through telephone calls. Results Of the 60 patients recruited, one withdrew and 11 were discharged before observation resulting in analysis of 39 patients in the intervention group and nine in the control group. A dispensing error proportion of 3.4% was found in the intervention group and 16.1% in the control group. A total of 91.7% of patients in the intervention group and 66.7% in the control group were highly satisfied with the medication management during hospitalization. The overall protocol worked as planned. Minor changes in exclusion criteria, intervention, and outcome measures were considered. Conclusions It may be feasible to perform a pragmatic randomized controlled trial of the safety and cost-consequences of self-administration of medication during hospitalization. Trial registration ClinicalTrials.gov, NCT03541421 , retrospectively registered on 30 May 2018.
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- 2020
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37. Effectiveness of remote care interventions: a systematic review informing the 2022 EULAR Points to Consider for remote care in rheumatic and musculoskeletal diseases
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Francis Berenbaum, Louise Falzon, Tanja A Stamm, Dieter Wiek, Christian Dejaco, Alen Zabotti, Johannes Knitza, Helena Canhão, Christina Duftner, Martin Krusche, Johannes WJ Bijlsma, Hana Smucrova, Chetan Mukhtyar, Yeliz Prior, Polina Pchelnikova, Aurélie Najm, Luca Quartuccio, Nina Østerås, Annette de Thurah, Silvia Piantoni, Sara Badreh, Yvette Meissner, Andréa Marques, Rinie Geenen, Tanja Stamm, Meghna Jani, Johannes Bijlsma, Philipp Bosch, Tim Pelle, Line Raunsbæk Knudsen, Nikolay Stoilov, Chetan B. Mukhtyar, Savia de Souza, and James M. Gwinnutt
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Medicine - Published
- 2022
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38. Future challenges in rheumatology – is telemedicine the solution?
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Annette de Thurah, Andrea Marques, Savia de Souza, Cynthia S. Crowson, and Elena Myasoedova
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Diseases of the musculoskeletal system ,RC925-935 - Abstract
The COVID-19 pandemic has become an unprecedented facilitator of rapid telehealth expansion within rheumatology. Due to demographic shifts and workforce shortages in the future, new models of rheumatology care will be expected to emerge, with a growing footprint of telehealth interventions. Telehealth is already being used to monitor patients with rheumatic diseases and initial studies show good results in terms of safety and disease progression. It is being used as a tool for appointment prioritization and triage, and there is good evidence for using telehealth in rehabilitation, patient education and self-management interventions. Electronic patient-reported outcomes (ePROs) offer a number of long-term benefits and opportunities, and a routine collection of ePROs also facilitates epidemiological research that can inform future healthcare delivery. Telehealth solutions should be developed in close collaboration with all stakeholders, and the option of a telehealth visit must not deprive patients of the possibility to make use of a conventional ‘face-to-face’ visit. Future studies should especially focus on optimal models for rheumatology healthcare delivery to patients living in remote areas who are unable to use or access computer technology, and other patient groups at risk for disparity due to technical inequity and lack of knowledge.
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- 2022
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39. Effects of physical exercise and body weight on disease-specific outcomes of people with rheumatic and musculoskeletal diseases (RMDs): systematic reviews and meta-analyses informing the 2021 EULAR recommendations for lifestyle improvements in people with RMDs
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Annelies Boonen, Francis Guillemin, Heike A Bischoff-Ferrari, Polina Putrik, Karen Walker-Bone, Andra Balanescu, Joep Welling, Suzanne M M Verstappen, Giulio Cavalli, Annette de Thurah, Javier Rodríguez-Carrio, Rikke Helene Moe, Tanja Stamm, Lucía Silva-Fernández, Mirjana I Zlatkovic-Svenda, James M Gwinnutt, Thomas E Dorner, Maud Wieczorek, and Savia de Souza
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Medicine - Published
- 2022
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40. Significant others in inflammatory arthritis:roles, influences, and challenges — a scoping review
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Hansen, Charlotte Werdal, Nørgaard, Marianne Wetendorff, de Thurah, Annette, Midtgaard, Julie, Cromhout, Pernille Fevejle, Esbensen, Bente Appel, Hansen, Charlotte Werdal, Nørgaard, Marianne Wetendorff, de Thurah, Annette, Midtgaard, Julie, Cromhout, Pernille Fevejle, and Esbensen, Bente Appel
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Improving self-management in individuals with inflammatory arthritis (IA) is crucial for effective disease management. However, current recommendations primarily focus on interventions for the diagnosed individuals, overlooking the potential impact of their significant others on their self-management abilities. This review aims to fill this gap by identifying and mapping relevant research employing both qualitative and quantitative design to provide a broader understanding of the potential of significant others in relation to IA management. We examined studies published from 2007 to 2024 that explore our research questions using electronic databases and grey literature searches. Two independent reviewers meticulously screened and categorized the studies based on a developed framework employing basic content analysis. Out of 20.925 studies, 43 were included: 22 quantitative studies (including 1 educational trial), 20 qualitative studies, and 1 mixed-methods study. Our analysis of the included studies revealed that significant others predominantly provided practical and emotional support and could positively or negatively influence the person with IAs self-management abilities. Additionally, significant others reported their own feelings of emotional distress and expressed the need for knowledge, skills and social support enabling them to provide better support while taking care of them self. Greater focus on the significant others of those diagnosed with IA in their provision of support to this patient group may both improve the people with IA self-management skills and address significant others’ reported needs. Future studies should explore the impact of such initiatives through randomized controlled trials., Improving self-management in individuals with inflammatory arthritis (IA) is crucial for effective disease management. However, current recommendations primarily focus on interventions for the diagnosed individuals, overlooking the potential impact of their significant others on their self-management abilities. This review aims to fill this gap by identifying and mapping relevant research employing both qualitative and quantitative design to provide a broader understanding of the potential of significant others in relation to IA management. We examined studies published from 2007 to 2024 that explore our research questions using electronic databases and grey literature searches. Two independent reviewers meticulously screened and categorized the studies based on a developed framework employing basic content analysis. Out of 20.925 studies, 43 were included: 22 quantitative studies (including 1 educational trial), 20 qualitative studies, and 1 mixed-methods study. Our analysis of the included studies revealed that significant others predominantly provided practical and emotional support and could positively or negatively influence the person with IAs self-management abilities. Additionally, significant others reported their own feelings of emotional distress and expressed the need for knowledge, skills and social support enabling them to provide better support while taking care of them self. Greater focus on the significant others of those diagnosed with IA in their provision of support to this patient group may both improve the people with IA self-management skills and address significant others’ reported needs. Future studies should explore the impact of such initiatives through randomized controlled trials.
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- 2024
41. Synthesis of guidance available for assessing methodological quality and grading of evidence from qualitative research to inform clinical recommendations:A systematic literature review
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Sekhon, Mandeep, De Thurah, Annette, Fragoulis, George E., Schoones, Jan, Stamm, Tanja A., Vliet Vlieland, Theodora P.M., Esbensen, Bente Appel, Lempp, Heidi, Bearne, Lindsay, Kouloumas, Marios, Pchelnikova, Polina, Swinnen, Thijs Willem, Blunt, Chris, Ferreira, Ricardo J.O., Carmona, Loreto, Nikiphorou, Elena, Sekhon, Mandeep, De Thurah, Annette, Fragoulis, George E., Schoones, Jan, Stamm, Tanja A., Vliet Vlieland, Theodora P.M., Esbensen, Bente Appel, Lempp, Heidi, Bearne, Lindsay, Kouloumas, Marios, Pchelnikova, Polina, Swinnen, Thijs Willem, Blunt, Chris, Ferreira, Ricardo J.O., Carmona, Loreto, and Nikiphorou, Elena
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Objective To understand (1) what guidance exists to assess the methodological quality of qualitative research; (2) what methods exist to grade levels of evidence from qualitative research to inform recommendations within European Alliance of Associations for Rheumatology (EULAR). Methods A systematic literature review was performed in multiple databases including PubMed/Medline, EMBASE, Web of Science, COCHRANE and PsycINFO, from inception to 23 October 2020. Eligible studies included primary articles and guideline documents available in English, describing the: (1) development; (2) application of validated tools (eg, checklists); (3) guidance on assessing methodological quality of qualitative research and (4) guidance on grading levels of qualitative evidence. A narrative synthesis was conducted to identify key similarities between included studies. Results Of 9073 records retrieved, 51 went through to full-manuscript review, with 15 selected for inclusion. Six articles described methodological tools to assess the quality of qualitative research. The tools evaluated research design, recruitment, ethical rigour, data collection and analysis. Seven articles described one approach, focusing on four key components to determine how much confidence to place in findings from systematic reviews of qualitative research. Two articles focused on grading levels of clinical recommendations based on qualitative evidence; one described a qualitative evidence hierarchy, and another a research pyramid. Conclusion There is a lack of consensus on the use of tools, checklists and approaches suitable for appraising the methodological quality of qualitative research and the grading of qualitative evidence to inform clinical practice. This work is expected to facilitate the inclusion of qualitative evidence in the process of developing recommendations at EULAR level., Objective To understand (1) what guidance exists to assess the methodological quality of qualitative research; (2) what methods exist to grade levels of evidence from qualitative research to inform recommendations within European Alliance of Associations for Rheumatology (EULAR). Methods A systematic literature review was performed in multiple databases including PubMed/Medline, EMBASE, Web of Science, COCHRANE and PsycINFO, from inception to 23 October 2020. Eligible studies included primary articles and guideline documents available in English, describing the: (1) development; (2) application of validated tools (eg, checklists); (3) guidance on assessing methodological quality of qualitative research and (4) guidance on grading levels of qualitative evidence. A narrative synthesis was conducted to identify key similarities between included studies. Results Of 9073 records retrieved, 51 went through to full-manuscript review, with 15 selected for inclusion. Six articles described methodological tools to assess the quality of qualitative research. The tools evaluated research design, recruitment, ethical rigour, data collection and analysis. Seven articles described one approach, focusing on four key components to determine how much confidence to place in findings from systematic reviews of qualitative research. Two articles focused on grading levels of clinical recommendations based on qualitative evidence; one described a qualitative evidence hierarchy, and another a research pyramid. Conclusion There is a lack of consensus on the use of tools, checklists and approaches suitable for appraising the methodological quality of qualitative research and the grading of qualitative evidence to inform clinical practice. This work is expected to facilitate the inclusion of qualitative evidence in the process of developing recommendations at EULAR level.
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- 2024
42. Maintaining good mental health in people with inflammatory arthritis:a qualitative study of patients' perspectives
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Abild, Signe Marie, Midtgaard, Julie, Nordkamp, Annika, de Thurah, Annette, Vestergaard, Sofie Bech, Glintborg, Bente, Aadahl, Mette, Cromhout, Pernille Fevejle, Lau, Lene, Yilmaz, Connie, Esbensen, Bente Appel, Abild, Signe Marie, Midtgaard, Julie, Nordkamp, Annika, de Thurah, Annette, Vestergaard, Sofie Bech, Glintborg, Bente, Aadahl, Mette, Cromhout, Pernille Fevejle, Lau, Lene, Yilmaz, Connie, and Esbensen, Bente Appel
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Purpose It is well-documented that people with inflammatory arthritis (IA) exhibit a high prevalence of symptoms related to anxiety and depression. Less is known about what contributes to good mental health in people with IA. Therefore, this study aims to explore how some patients maintain good mental health despite living with IA. Methods Explorative qualitative interview study (one focus group, 12 individual interviews, n = 18) utilizing purposeful sampling. All interviews were audiotaped, transcribed, and managed using NVivo14 and employed a reflexive thematical analysis approach. Results We identified four main themes: 1) Assisted by a positive outlook on life—how participants’ inherent positivity helped them cope with arthritis; 2) Moving towards acceptance of life with arthritis—how participants embraced the reality of living with IA; 3) Counteracting letting arthritis dictate one’s life how the participants structured their lives in terms of physical activity and social connections; and 4) Taking responsibility for the trajectory—how the participants were mindful of their bodies and took the initiative to explore new treatments. Conclusion People living with IA maintain good mental health by engaging in structured physical activity, fostering social connections, and cultivating a positive outlook on life. These insights can inform the development of future treatment and support strategies., PURPOSE: It is well-documented that people with inflammatory arthritis (IA) exhibit a high prevalence of symptoms related to anxiety and depression. Less is known about what contributes to good mental health in people with IA. Therefore, this study aims to explore how some patients maintain good mental health despite living with IA. METHODS: Explorative qualitative interview study (one focus group, 12 individual interviews, n = 18) utilizing purposeful sampling. All interviews were audiotaped, transcribed, and managed using NVivo14 and employed a reflexive thematical analysis approach. RESULTS: We identified four main themes: 1) Assisted by a positive outlook on life-how participants' inherent positivity helped them cope with arthritis; 2) Moving towards acceptance of life with arthritis-how participants embraced the reality of living with IA; 3) Counteracting letting arthritis dictate one's life how the participants structured their lives in terms of physical activity and social connections; and 4) Taking responsibility for the trajectory-how the participants were mindful of their bodies and took the initiative to explore new treatments. CONCLUSION: People living with IA maintain good mental health by engaging in structured physical activity, fostering social connections, and cultivating a positive outlook on life. These insights can inform the development of future treatment and support strategies.
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- 2024
43. Effectiveness of a novel digital patient education programme to support self-management of early rheumatoid arthritis:a randomized controlled trial
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Knudsen, Line R., Ndosi, Mwidimi, Hauge, Ellen-Margrethe, Lomborg, Kirsten, Dreyer, Lene, Aaboe, Sidsel, Kjær, Marie B., Sørensen, Lis, Volsmann, Lena, Christensen, Heidi M., de Thurah, Annette, Knudsen, Line R., Ndosi, Mwidimi, Hauge, Ellen-Margrethe, Lomborg, Kirsten, Dreyer, Lene, Aaboe, Sidsel, Kjær, Marie B., Sørensen, Lis, Volsmann, Lena, Christensen, Heidi M., and de Thurah, Annette
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OBJECTIVES: To evaluate the effectiveness of a novel digital patient education (PE) programme in improving self-management in patients newly diagnosed with rheumatoid arthritis (RA).METHODS: This was a parallel, open-label, two arms, randomised controlled trial with superiority design. Patients from five rheumatology clinics were randomised into digital PE (intervention) or face-to-face PE (control). The primary outcome was self-efficacy, measured by average difference in the Rheumatoid Arthritis Self-Efficacy (RASE) score from baseline to month 12. Secondary outcomes were RA knowledge, health literacy, adherence, and quality of life. Healthcare utilisation data and digital PE programme usage were recorded. Self-efficacy, knowledge, and health literacy data were analysed using mixed-effects repeated measures modelling; adherence using logistic regression, and quality of life and healthcare utilization using descriptive statistics with the Wilcoxon rank-sum test.RESULTS: Of the 180 patients randomised (digital PE, n = 89; face-to-face PE, n = 91), 175 had data available for analysis. Median age was 59.0 years, and 61% were women. The average difference in self-efficacy between groups from baseline to month 12 was significant by a -4.34 difference in RASE score, favouring the intervention group (95%CI -8.17 to -0.51; p= 0.026). RA knowledge, health literacy, and quality of life showed minor improvements over time but no difference between groups, except out-patient clinic contacts which were fewer in the intervention group.CONCLUSIONS: The findings suggest that digital PE is effective in improving self-efficacy and therefore self-management in patients with early RA. This intervention has potential to lower healthcare costs by decreasing out-patient clinic contacts.TRIAL REGISTRATION NUMBER: clinicaltrials.gov, NCT04669340.
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- 2024
44. Educational readiness among health professionals in rheumatology : low awareness of EULAR offerings and unfamiliarity with the course content as major barriers – results of a EULAR-funded European survey
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Ritschl, Valentin, Sperl, Lisa, Andrews, Margaret Renn, Björk, Mathilda, Boström, Carina, Cappon, Jeannette, Davergne, Thomas, de la Torre-Aboki, Jenny, de Thurah, Annette, Domján, Andrea, Dragoi, Razvan Gabriel, Estévez-López, Fernando, Ferreira, Ricardo J. O., Fragoulis, George E., Grygielska, Jolanta, Kõrve, Katti, Kukkurainen, Marja Leena, Madelaine-Bonjour, Christel, Marques, Andréa, Meesters, Jorit, Moe, Rikke Helene, Moholt, Ellen, Mosor, Erika, Naimer-Stach, Claudia, Ndosi, Mwidimi, Pchelnikova, Polina, Primdahl, Jette, Putrik, Polina, Rausch Osthoff, Anne-Kathrin, Smucrova, Hana, Testa, Marco, van Bodegom-Vos, Leti, Peter, Wilfred F., Zangi, Heidi A., Zimba, Olena, Vliet Vlieland, Theodora P. M., Stamm, Tanja A., Ritschl, Valentin, Sperl, Lisa, Andrews, Margaret Renn, Björk, Mathilda, Boström, Carina, Cappon, Jeannette, Davergne, Thomas, de la Torre-Aboki, Jenny, de Thurah, Annette, Domján, Andrea, Dragoi, Razvan Gabriel, Estévez-López, Fernando, Ferreira, Ricardo J. O., Fragoulis, George E., Grygielska, Jolanta, Kõrve, Katti, Kukkurainen, Marja Leena, Madelaine-Bonjour, Christel, Marques, Andréa, Meesters, Jorit, Moe, Rikke Helene, Moholt, Ellen, Mosor, Erika, Naimer-Stach, Claudia, Ndosi, Mwidimi, Pchelnikova, Polina, Primdahl, Jette, Putrik, Polina, Rausch Osthoff, Anne-Kathrin, Smucrova, Hana, Testa, Marco, van Bodegom-Vos, Leti, Peter, Wilfred F., Zangi, Heidi A., Zimba, Olena, Vliet Vlieland, Theodora P. M., and Stamm, Tanja A.
- Abstract
Background: Ongoing education of health professionals in rheumatology (HPR) is critical for high-quality care. An essential factor is education readiness and a high quality of educational offerings. We explored which factors contributed to education readiness and investigated currently offered postgraduate education, including the European Alliance of Associations for Rheumatology (EULAR) offerings. Methods and participants: We developed an online questionnaire, translated it into 24 languages and distributed it in 30 European countries. We used natural language processing and the Latent Dirichlet Allocation to analyse the qualitative experiences of the participants as well as descriptive statistics and multiple logistic regression to determine factors influencing postgraduate educational readiness. Reporting followed the Checklist for Reporting Results of Internet E-Surveys guideline. Results: The questionnaire was accessed 3589 times, and 667 complete responses from 34 European countries were recorded. The highest educational needs were ‘professional development’, ‘prevention and lifestyle intervention’. Older age, more working experience in rheumatology and higher education levels were positively associated with higher postgraduate educational readiness. While more than half of the HPR were familiar with EULAR as an association and the respondents reported an increased interest in the content of the educational offerings, the courses and the annual congress were poorly attended due to a lack of awareness, comparatively high costs and language barriers. Conclusions: To promote the uptake of EULAR educational offerings, attention is needed to increase awareness among national organisations, offer accessible participation costs, and address language barriers.
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- 2024
45. Prevalence of anxiety and depression and the association with self-management behaviour in >12 000 patients with inflammatory rheumatic disease:a cross-sectional nationwide study
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Vestergaard, Sofie Bech, Esbensen, Bente Appel, Klausen, Julie Midtgaard, Glintborg, Bente, Lau, Lene, Yilmaz Jantzen, Connie, Aadahl, Mette, Fevejle Cromhout, Pernille, de Thurah, Annette, Vestergaard, Sofie Bech, Esbensen, Bente Appel, Klausen, Julie Midtgaard, Glintborg, Bente, Lau, Lene, Yilmaz Jantzen, Connie, Aadahl, Mette, Fevejle Cromhout, Pernille, and de Thurah, Annette
- Abstract
Objective To investigate the prevalence of anxiety and depression among patients with inflammatory arthritis (IA) and evaluate the association of these mental health issues with self-management behaviour. Methods In this nationwide cross-sectional study, we analysed data from 12 713 adult Danish patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA) or spondyloarthritis (SpA). Patients received an electronic questionnaire covering sociodemographics, self-management behaviour and mental health status. Questionnaire data were linked to clinical data from the Danish Rheumatology database (DANBIO) and the Danish National Patient Registry. The prevalence of anxiety and depression (by the Hospital Anxiety and Depression Scale for Anxiety (HADS-A) and Depression (HADS-D)) was estimated separately for RA/PsA/SpA. The association between mental health status and low self-management behaviour (adherence to treatment, health activation and physical activity) was estimated using multivariable logistic regression, adjusting for age, sex, educational level and comorbidity. Results The prevalence of anxiety (HADS-A≥8) was highest for patients with SpA (34.5% (95% CI 32.4% to 36.6%)) and lowest for patients with RA (22.1% (95% CI 21.2% to 23.0%)), it was higher for women, younger (<55 years) and recently diagnosed (<3 years) patients and those with basic education. Similar prevalence estimates were found for depression. Across diagnoses, the clinically relevant symptoms of anxiety and depression (HADS≥8) were significantly associated with low self-management behaviour. Conclusion Patients with IA showed substantial levels of anxiety and depression. A statistically significant association between anxiety and depression and low self-management behaviour was identified. These findings call for a systematic approach to identifying mental health issues in patients with IA., OBJECTIVE: To investigate the prevalence of anxiety and depression among patients with inflammatory arthritis (IA) and evaluate the association of these mental health issues with self-management behaviour. METHODS: In this nationwide cross-sectional study, we analysed data from 12 713 adult Danish patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA) or spondyloarthritis (SpA). Patients received an electronic questionnaire covering sociodemographics, self-management behaviour and mental health status. Questionnaire data were linked to clinical data from the Danish Rheumatology database (DANBIO) and the Danish National Patient Registry. The prevalence of anxiety and depression (by the Hospital Anxiety and Depression Scale for Anxiety (HADS-A) and Depression (HADS-D)) was estimated separately for RA/PsA/SpA. The association between mental health status and low self-management behaviour (adherence to treatment, health activation and physical activity) was estimated using multivariable logistic regression, adjusting for age, sex, educational level and comorbidity. RESULTS: The prevalence of anxiety (HADS-A≥8) was highest for patients with SpA (34.5% (95% CI 32.4% to 36.6%)) and lowest for patients with RA (22.1% (95% CI 21.2% to 23.0%)), it was higher for women, younger (<55 years) and recently diagnosed (<3 years) patients and those with basic education. Similar prevalence estimates were found for depression. Across diagnoses, the clinically relevant symptoms of anxiety and depression (HADS≥8) were significantly associated with low self-management behaviour. CONCLUSION: Patients with IA showed substantial levels of anxiety and depression. A statistically significant association between anxiety and depression and low self-management behaviour was identified. These findings call for a systematic approach to identifying mental health issues in patients with IA.
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- 2024
46. 2023 EULAR recommendations on imaging in diagnosis and management of crystal-induced arthropathies in clinical practice
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Mandl, Peter, D'Agostino, Maria Antonietta, Navarro-Compán, Victoria, Geßl, Irina, Sakellariou, Garifallia, Banerjee, Abhishek, Becce, Fabio, Dalbeth, Nicola, Ea, Hang-Korng, Filippucci, Emilio, Hammer, Hilde Berner, Iagnocco, Annamaria, de Thurah, Annette, Naredo, Esperanza, Ottaviani, Sebastien, Pascart, Tristan, Pérez-Ruiz, Fernando, Pitsillidou, Irene A, Proft, Fabian, Rech, Juergen, Schmidt, Wolfgang A, Sconfienza, Luca Maria, Terslev, Lene, Wildner, Brigitte, Zufferey, Pascal, Filippou, Georgios, D'Agostino, Maria Antonietta (ORCID:0000-0002-5347-0060), Abhishek, Abhishek, Mandl, Peter, D'Agostino, Maria Antonietta, Navarro-Compán, Victoria, Geßl, Irina, Sakellariou, Garifallia, Banerjee, Abhishek, Becce, Fabio, Dalbeth, Nicola, Ea, Hang-Korng, Filippucci, Emilio, Hammer, Hilde Berner, Iagnocco, Annamaria, de Thurah, Annette, Naredo, Esperanza, Ottaviani, Sebastien, Pascart, Tristan, Pérez-Ruiz, Fernando, Pitsillidou, Irene A, Proft, Fabian, Rech, Juergen, Schmidt, Wolfgang A, Sconfienza, Luca Maria, Terslev, Lene, Wildner, Brigitte, Zufferey, Pascal, Filippou, Georgios, D'Agostino, Maria Antonietta (ORCID:0000-0002-5347-0060), and Abhishek, Abhishek
- Abstract
Objective: To formulate evidence-based recommendations and overarching principles on the use of imaging in the clinical management of crystal-induced arthropathies (CiAs). Methods: An international task force of 25 rheumatologists, radiologists, methodologists, healthcare professionals and patient research partners from 11 countries was formed according to the EULAR standard operating procedures. Fourteen key questions on the role of imaging in the most common forms of CiA were generated. The CiA assessed included gout, calcium pyrophosphate deposition disease and basic calcium phosphate deposition disease. Imaging modalities included conventional radiography, ultrasound, CT and MRI. Experts applied research evidence obtained from four systematic literature reviews using MEDLINE, EMBASE and CENTRAL. Task force members provided level of agreement (LoA) anonymously by using a Numerical Rating Scale from 0 to 10. Results: Five overarching principles and 10 recommendations were developed encompassing the role of imaging in various aspects of patient management: making a diagnosis of CiA, monitoring inflammation and damage, predicting outcome, response to treatment, guided interventions and patient education. Overall, the LoA for the recommendations was high (8.46-9.92). Conclusions: These are the first recommendations that encompass the major forms of CiA and guide the use of common imaging modalities in this disease group in clinical practice.
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- 2024
47. Contact with general practice in patients with suspected chronic coronary syndrome before and after CT angiography compared with the general population
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Nissen, Louise, Søby, Jacob Hartmann, de Thurah, Annette, Prescott, Eva, Prior, Anders, Winther, Simon, and Bøttcher, Morten
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Graphical AbstractPatients undergoing coronary CTA due to symptoms suggestive of chronic coronary syndrome have an increased use visits to general practitioners in a 5 year period prior to examination, compared to a reference population.
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- 2024
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48. 2023 EULAR recommendations on imaging in diagnosis and management of crystal-induced arthropathies in clinical practice
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Mandl, Peter, primary, D’Agostino, Maria Antonietta, additional, Navarro-Compán, Victoria, additional, Geßl, Irina, additional, Sakellariou, Garifallia, additional, Abhishek, Abhishek, additional, Becce, Fabio, additional, Dalbeth, Nicola, additional, Ea, Hang-Korng, additional, Filippucci, Emilio, additional, Hammer, Hilde Berner, additional, Iagnocco, Annamaria, additional, de Thurah, Annette, additional, Naredo, Esperanza, additional, Ottaviani, Sebastien, additional, Pascart, Tristan, additional, Pérez-Ruiz, Fernando, additional, Pitsillidou, Irene A, additional, Proft, Fabian, additional, Rech, Juergen, additional, Schmidt, Wolfgang A, additional, Sconfienza, Luca Maria, additional, Terslev, Lene, additional, Wildner, Brigitte, additional, Zufferey, Pascal, additional, and Filippou, Georgios, additional
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- 2024
- Full Text
- View/download PDF
49. Prevalence of anxiety and depression and the association with self-management behaviour in >12 000 patients with inflammatory rheumatic disease: a cross-sectional nationwide study
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Vestergaard, Sofie Bech, primary, Esbensen, Bente Appel, additional, Klausen, Julie Midtgaard, additional, Glintborg, Bente, additional, Lau, Lene, additional, Yilmaz Jantzen, Connie, additional, Aadahl, Mette, additional, Fevejle Cromhout, Pernille, additional, and de Thurah, Annette, additional
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- 2024
- Full Text
- View/download PDF
50. Remote symptom monitoring with patient-reported outcome measures in outpatients with chronic kidney disease (PROKID): a multicentre randomised controlled non-inferiority study.
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Grove, Birgith Engelst, Schougaard, Liv Marit Valen, Mose, Frank, Randers, Else, Hjollund, Niels Henrik, Ivarsen, Per, and Thurah, Annette De
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MEDICAL care ,PATIENT reported outcome measures ,CHRONIC kidney failure ,GLOMERULAR filtration rate ,PATIENT participation - Abstract
Background The increasing incidence of chronic kidney disease (CKD) is straining the capacity of outpatient clinics. Remote healthcare delivery might improve CKD follow-up compared with conventional face-to-face follow-up. Patient-reported outcomes (PROs) are used to empower remote follow-up and patient engagement. The consequences of shifting from face-to-face follow-up to remote outpatient follow-up on kidney function, health resource utilisation and quality of life remain unknown. Methods We conducted a multicentre pragmatic non-inferiority trial at three outpatient clinics in the Central Denmark Region. A total of 152 incident outpatients with CKD were randomised (1:1:1) to either PRO-based, PRO-telephone follow-up or standard of care (SoC). The primary outcome was the annual change in kidney function measured by the slope of the estimated glomerular filtration rate (eGFR). The non-inferiority margin was an eGFR of 2.85 ml/min/1.73 m
2 /year. Mean differences were estimated using intention-to-treat (ITT), per protocol and random coefficient models. Results Mean eGFR slope differences between PRO-based and SoC were −0.97 ml/min/1.73 m2 /year [95% confidence interval (CI) −3.00–1.07] and −1.06 ml/min/1.73 m2 /year (95% CI −3.02–0.89) between PRO-telephone and SoC. Non-inferiority was only established in the per-protocol analysis due to CIs exceeding the margin in the ITT group. Both intervention groups had fewer outpatient visits: −4.95 (95% CI −5.82 to −4.08) for the PRO-based group and −5.21 (95% CI −5.95 to −4.46) for the PRO-telephone group. We found no significant differences in quality of life, illness perception or satisfaction. Conclusion Differences in the eGFR slope between groups were non-significant and results on non-inferiority were inconclusive. Thus, transitioning to remote PRO-based follow-up requires close monitoring of kidney function. Reducing patients' attendance in the outpatient clinic was possible without decreasing either quality of life or illness perception. ClinicalTrials.gov identifier: NCT03847766 [ABSTRACT FROM AUTHOR]- Published
- 2024
- Full Text
- View/download PDF
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