| 1. |
- Bennett, Sarah E., et al.
(författare)
-
Assessing acceptability and identifying barriers and facilitators to implementation of the EULAR recommendations for patient education in inflammatory arthritis : a mixed-methods study with rheumatology professionals in 23 European and Asian countries
- 2022
-
Ingår i: Annals of the Rheumatic Diseases. - : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 81:10, s. 1348-1357
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives: To disseminate and assess the level of acceptability and applicability of the European Alliance of Associations for Rheumatology (EULAR) recommendations for patient education among professionals in rheumatology across Europe and three Asian countries and identify potential barriers and facilitators to their application. Methods: A parallel convergent mixed-methods design with an inductive approach was used. A web-based survey, available in 20 different languages, was distributed to health professionals by non-probability sampling. The level of agreement and applicability of each recommendation was assessed by (0-10) rating scales. Barriers and facilitators to implementation were assessed using free-text responses. Quantitative data were analysed descriptively and qualitative data by content analysis and presented in 16 categories supported by quotes. Results: A total of 1159 completed the survey; 852 (73.5%) were women. Most of the professionals were nurses (n=487), rheumatologists (n=320), physiotherapists (n=158). For all recommendations, the level of agreement was high but applicability was lower. The four most common barriers to application were lack of time, lack of training in how to provide patient education, not having enough staff to perform this task and lack of evaluation tools. The most common facilitators were tailoring patient education to individual patients, using group education, linking patient education with diagnosis and treatment and inviting patients to provide feedback on patient education delivery.Conclusions: This project has disseminated the EULAR recommendations for patient education to health professionals across 23 countries. Potential barriers to their application were identified and some are amenable to change, namely training patient education providers and developing evaluation tools. © Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.
|
|
| 2. |
- Blum, Nadine Schäffer, et al.
(författare)
-
Patients’ experience of a novel interdisciplinary nurse-led self-management intervention (INSELMA)—a qualitative evaluation
- 2024
-
Ingår i: BMC Rheumatology. - 2520-1026. ; 8:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Despite continuous improvements in anti-rheumatic pharmacological treatment, people with chronic inflammatory arthritis still report substantial disease impact. Based on the framework for complex interventions, we thus developed INSELMA, a novel nurse-coordinated multidisciplinary self-management intervention for patients with rheumatoid arthritis, psoriatic arthritis or axial spondyloarthritis. Based on individual biopsychosocial assessments, a rheumatology nurse facilitated goal setting and coordinated interdisciplinary support. The aim of this study was to explore the patients’ experience of participating in the six-months INSELMA intervention. Methods: Individual semi-structured interviews were conducted with 15 of the participants after their final follow-up. Thematic analysis was applied. Results: The analysis derived four overall themes. (1) A new opportunity at the right time. The participants’ disease impacted all areas of daily life. Participation in INSELMA was experienced as an opportunity to improve symptoms and together reduce long-held challenges they had fought alone, until now. (2) The importance of person-centred goals. The participants found it meaningful to work with their individual goals, which encompassed physical, psychological, and social factors. Having time between consultations to work with goals at home was important. (3) Empathy, partnership and a little nudging from health professionals are essential. The empathic nurses’ continuous support and coaching helped participants become aware of their own resources. The participants highlighted having access to support from a physiotherapist and occupational therapist with rheumatology experience as important. (4) I got more than I could have hoped for. Most of the participants experienced decreased symptom load and improvement in physical strength, mobility, sleep, and mood as well as increased energy, knowledge, and self-management ability. The participants expressed new hope for the future with an improved ability to manage their symptoms and work towards new goals. Conclusion: The participants found the INSELMA intervention meaningful and feasible. They experienced decreased disease impact and increased activity levels, facilitated by empathy and self-management support from health professionals.
|
|
| 3. |
- Damgaard, Astrid Jensen, et al.
(författare)
-
Self-management support needs of patients with inflammatory arthritis and the content of self-management interventions : a scoping review
- 2023
-
Ingår i: Seminars in Arthritis and Rheumatism. - 0049-0172. ; 60
-
Forskningsöversikt (refereegranskat)abstract
- Background: Self-management skills can empower a person to manage the physical, psychological, and social impact of a health condition. However, the components of self-management interventions differ widely between studies and interventions. By performing a scoping review, we aimed to describe patients’ self-management needs and how health professionals (HPs) can provide effective self-management support to patients with inflammatory arthritis (IA). Objectives: 1) to identify the evidence for self-management support needs of patients with IA, and 2) to identify the content (theory/theoretical approach, mode of delivery, duration and frequency) of self-management interventions that target patients with IA. Methods: In May 2021, we performed a systematic literature search (from 2000 onward) in five databases (CINAHL (Ebsco), Cochrane Library, Embase (Ovid), Medline (Ovid) and PsycINFO (Ovid)) regarding self-management in patients with IA. Results: Out of 11,748 records identified, we included 31 articles describing patients’ support needs and 33 articles describing the content of self-management interventions. Patients’ support needs were sorted into six topics: 1) disease impact and the pharmacological treatment, 2) care continuity and relations with HPs, 3) the importance of non-pharmacological treatment, 4) the need for support from family and friends, 5) support needs related to work issues, and 6) contextual preferences for self-management support. The theory/theoretical approach, mode of delivery, duration and frequency varied widely and were often unclearly or insufficiently described. In addition, the self-management concept was scarcely – or not – defined in the included articles. The identified topics for support needs were compared with the described content in the included articles. Only a few self-management interventions focused on patients’ need for support in relation to work, and to family and friends. Conclusion: HPs provided self-management support to patients with IA in various ways, but there were gaps between the patients’ support needs and the identified interventions. In developing self-management interventions, the self-management concept needs to be defined and a clear theory is required to support the development of the intervention. Future studies should seek to investigate various modes of delivery, frequency and duration, to develop effective interventions that meet patients’ support needs.
|
|
| 4. |
- de Thurah, Annette, et al.
(författare)
-
High-quality RMD rehabilitation and telehealth : Evidence and clinical practice
- 2020
-
Ingår i: Best Practice and Research: Clinical Rheumatology. - : Elsevier BV. - 1521-6942. ; 34:2
-
Forskningsöversikt (refereegranskat)abstract
- Within rheumatology, telehealth is essential to modern rehabilitation due to the demographic development with more and more elderly people. At present, telehealth solutions are used as part of the rehabilitation process in assessment, interventions and evaluation. Telehealth interventions are as effective as conventional follow-ups or self-management assessments, but the evidence on the effect is still sparse. Telehealth interventions seem to support a physically active lifestyle in the short term. In general, telehealth solutions are well received by patients, but the development must be based on user involvement, behaviour theory and the World Health Organisation principles of creating health literate organisations in order to ensure usability, effectiveness and further implementation.
|
|
| 5. |
- Jones, Bethan, et al.
(författare)
-
Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis : a mixed-methods study with patients’ perspectives
- 2022
-
Ingår i: RMD Open. - London : BMJ Publishing Group Ltd. - 2056-5933. ; 8:1
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives: To explore patients’ agreement andreasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA). Methods: This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree towhich patients with IA agreed with each recommendationfor PE (0=do not agree at all and 10=agree completely)and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants’ demographics and agreement levels. Qualitative contentanalysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons foragreement or disagreement with the recommendations,which constituted the categories. Results: The sample comprised 2779 participants(79% female), with a mean (SD) age 55.1 (13.1) yearsand disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median10 (IQR: 9–10) for most recommendations). Reasonsfor agreement with the recommendations included thebenefit of using PE to facilitate collaborative care andshared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients.Reasons for disagreement included lack of resources for PE, not wanting informa tion to be tailored by healthcare professionals and a reluctance to use telephone-basedPE. Conclusion: The EULAR recommendations for PE havebeen disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients’ preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals. © Author(s) (or their employer(s)) 2022.
|
|
| 6. |
- Karstensen, Julie Katrine, et al.
(författare)
-
Lifestyle factors in patients with rheumatoid arthritis—a cross-sectional study on two Scandinavian cohorts
- 2022
-
Ingår i: Clinical Rheumatology. - : Springer Science and Business Media LLC. - 0770-3198 .- 1434-9949. ; 41:2, s. 387-398
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction: The risk for cardiovascular diseases and other comorbidities increases with the number of unhealthy lifestyle factors in the general population. However, information on the combined number of unhealthy lifestyle factors in people with rheumatoid arthritis (RA) is scarce. Objectives: To study lifestyle factors and the association between disease impact and two or more unhealthy lifestyle factors in two Scandinavian cohorts with RA. Methods: We analysed data from two cohorts, Danish (n = 566; mean age 61.82 (SD 11.13) years; 72% women) and Swedish (n = 955; mean age 66.38 (SD 12.90) years; 73% women). Lifestyle factors (tobacco use, BMI, alcohol consumption and physical activity) were dichotomised as healthy vs. unhealthy (range 0–4 unhealthy factors). The association between disease impact and two or more unhealthy lifestyle factors was analysed using logistic regression. Results: Sixty-six percent of Danish and 47% of Swedish respondents reported two or more unhealthy lifestyle factors, most commonly, being overweight/obese and physical inactivity. For Danish participants, two or more unhealthy lifestyle factors were associated with (OR and 95% CI) male gender (1.86; 1.21–2.85), cardiovascular diseases (1.90; 1.28–2.82) and disease duration (0.97; 0.95–0.99). Corresponding findings for the Swedish cohort were male gender (1.42; 1.07–1.89), pain (1.10; 1.04–1.15), fatigue (1.09; 1.04–1.15), physical functioning (1.64; 1.28–2.10) and quality of life (0.35; 0.20–0.60). Conclusion: Many patients, most often male, in both cohorts had two or more unhealthy lifestyle factors. The number of unhealthy lifestyle factors indicates a multifaceted relationship with disease impact.
|
|
| 7. |
- Karstensen, Julie Katrine, et al.
(författare)
-
Participation in cardiovascular screening consultations, the who, when and why - A cohort study on patients with rheumatoid arthritis
- 2024
-
Ingår i: BMC Rheumatology. - 2520-1026. ; 8:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background: In accordance with the EULAR recommendations, the Danish Hospital for Rheumatic Diseases have systematically invited patients with rheumatoid arthritis (RA) to cardiovascular (CV) risk assessment since 2011. Patients with high risk are invited to a follow-up screening after one year. To optimize the screening and tailor it to individual needs, information about who accepts vs. declines follow-up is needed. Thus, the aim of this study was to explore participation in systematic CV risk assessment among patients with RA. Furthermore, to explore differences between patients with low vs. high risk, and between patients with high risk who accept vs. decline follow-up. Methods: Data from 2,222 outpatients with RA in the period 2011-2021 were retrieved, and of these 1,522 were under 75 years and eligible to be invited. To assess the 10-year risk for CV death, the modified Systematic Coronary Risk Evaluation (mSCORE), derived by multiplying the SCORE by 1.5, was used. Logistic regression analyses were used to explore differences in CV risk factors (triglycerides, HbA1c, lifestyle factors) and measures of disease impact (pain, fatigue, patient global assessment, HAQ, EQ-5D-5L) between patients with low vs. high risk. Differences between high risk patients who accepted vs. declined follow-up were analysed using Wilcoxon rank sum test and chi-squared test for groups. Results: One thousand one hundred forty-nine received a CV screening invitation and 91 declined participation. Patients with high risk had significantly longer disease duration (OR; 95 CI) (1.017; 1.002-1.032), higher levels of triglycerides (1.834; 1.475-2.280), HbA1C (1.046; 1.020-1.070), pain (1.006; 1.001-1.012), and HAQ-score (1.305; 1.057-1.612) compared to patients with low risk and they more often declined follow-up (43% vs. 28%, p < 0.001). Those who declined a follow-up invitation were older (p = 0.016) and had shorter disease duration (p = 0.006) compared to those who accepted follow-up. Conclusion: A first CV screening consultation was accepted by most patients with RA, while only every other patient with high to very high CV risk adhered to a follow-up screening consultation. Neither measures of disease impact nor lifestyle factors were associated with adherence. Further studies are needed to explore the patients' motivation, barriers and facilitators for adherence or non-adherence to a follow-up consultation.
|
|
| 8. |
- Karstensen, Julie Katrine, et al.
(författare)
-
Patients’ perspectives on adherence to cardiovascular screening consultation and lifestyle changes
- 2024
-
Ingår i: Archives of Public Health. - 0778-7367. ; 82:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Rheumatoid arthritis (RA) poses a significant health burden, with patients facing a twofold higher risk of cardiovascular diseases compared to the general population. As a results, the international recommendations set forth by the European Alliance of Associations for Rheumatology, advocate for a structured cardiovascular (CV) risk management and adherence to a healthy lifestyle for patients with RA. Unhealthy lifestyle factors not only impact overall health but also worsen inflammation and hinder treatment response in patients with RA Despite these recommendations, there remains a knowledge gap regarding patients’ attitudes towards screening participation and lifestyle changes. Therefore, the aims of this study were firstly to explore the perspectives of patients with rheumatoid arthritis on participation and adherence to cardiovascular screening. Secondly, to explore patients’ perspectives on lifestyle changes. Methods: Semi-structured interviews based on a hermeneutic approach were conducted. The analysis was guided by qualitative content analysis, employing an inductive approach. Results: Nine women and seven men, aged 47 to 76 years, diagnosed with RA, and who had attended at least one CV screening session, took part in the study. Two primary themes, along with four sub-themes, emerged from the analysis. The first main theme, Accepting an offer, encompassed the sub-themes of Engagement in the screening consultation and Risk awareness, reflecting participants' views on their involvement in, and commitment to, CV screening. The second theme pertained to participants' perspectives on lifestyle changes: Living with a chronic disease and embracing changes, described through the sub-themes of Motivation for lifestyle changes and Strategies to achieve lifestyle changes. Conclusion: Motivations for taking part in the screening differed among the participants, ranging from simply accepting an invitation to joining as a proactive precaution. In general, there was unanimous agreement among the participants that the screening proved to be a positive encounter. While it may not have immediately prompted significant lifestyle alterations, it did enhance their awareness of risks and underscored the significance of maintaining a healthy lifestyle. Overall, the individual guidance and support for patients with rheumatoid arthritis should entail awareness of CV risk combined with support to lifestyle changes the participants want to pursue.
|
|
| 9. |
- Madsen, Christina Merete Tvede, et al.
(författare)
-
Developing a complex vocational rehabilitation intervention for patients with inflammatory arthritis : the WORK-ON study
- 2023
-
Ingår i: BMC Health Services Research. - 1472-6963. ; 23:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background: People with inflammatory arthritis often experience challenges at work and balancing paid work and energy in everyday life. Low work ability is common, and people with inflammatory arthritis face high risks of losing their jobs and permanent exclusion from the labour market. Context-specific tailored rehabilitation targeting persons with inflammatory arthritis is limited. The aim of this study is to describe the development of WORK-ON – a vocational rehabilitation for people with inflammatory arthritis. Methods: Following the Medical Research Council’s framework for complex interventions, WORK-ON was developed based on existing evidence, interviews with patients and rehabilitation clinicians, a workshop, and an iterative process. Results: The six-month vocational rehabilitation, WORK-ON, consists of 1) an initial assessment and goal setting by an occupational therapist experienced in rheumatology rehabilitation, 2) coordination by the same occupational therapist and individual support, including navigating across the primary and secondary health sectors, as well as social care, 3) group sessions for peer support, and 4) optionally individually tailored consultations with physiotherapists, nurses, or social workers. Conclusion: WORK-ON is ready to be tested in a feasibility study. Trial registration: The Regional Committees on Health Ethics for Southern Denmark stated that no formal ethical approval was necessary in this study (20,192,000–105).
|
|
| 10. |
- Madsen, Christina Merete Tvede, et al.
(författare)
-
Perceived challenges at work and need for professional support among people with inflammatory arthritis - a qualitative interview study
- 2023
-
Ingår i: Scandinavian Journal of Occupational Therapy. - : Informa UK Limited. - 1103-8128 .- 1651-2014. ; 30:5, s. 640-649
-
Tidskriftsartikel (refereegranskat)abstract
- Background: People with inflammatory arthritis (IA) often experience low work ability, and up to 38% lose their jobs during the initial years after the diagnosis of IA. Aim: We explore the perceived challenges at work and identify the need for professional support among Danish people with IA. Materials/methods: Individual explorative interviews based on a hermeneutic approach. We used Graneheim and Lundman’s qualitative content analysis. Results: Eleven women and four men with IA (aged 36–68 years) who worked full or part time, or were on short-term sick leave, participated. The analysis revealed one main theme, Balancing work as part of everyday life, and four sub-themes: 1) Working despite challenges, 2) Prioritising energy for work, 3) Fatigue leading to lack of control, and 4) Need for flexibility and recognition. Conclusions: People with IA prioritise staying at work despite experiencing challenges with fatigue and balancing their work and energy in everyday life. They need recognition, support and flexibility at work to be able to continue in their jobs. Significance: The study highlights the need to be aware of occupational balance and, thus, to include other aspects in life apart from just work. It points at occupational therapists as relevant partners in vocational rehabilitation.
|
|
