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- Blum, Nadine Schäffer, et al.
(författare)
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Patients’ experience of a novel interdisciplinary nurse-led self-management intervention (INSELMA)—a qualitative evaluation
- 2024
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Ingår i: BMC Rheumatology. - 2520-1026. ; 8:1
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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.
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| 2. |
- Karstensen, Julie Katrine, et al.
(författare)
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Participation in cardiovascular screening consultations, the who, when and why - A cohort study on patients with rheumatoid arthritis
- 2024
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Ingår i: BMC Rheumatology. - 2520-1026. ; 8:1
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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.
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| 3. |
- Landgren, Ellen, et al.
(författare)
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Belonging, happiness, freedom and empowerment - a qualitative study of patients' understanding of health in early rheumatoid arthritis
- 2024
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Ingår i: BMC Rheumatology. - London : Springer Nature. - 2520-1026. ; 8:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Rheumatoid arthritis (RA) is a chronic, systemic, inflammatory joint disease, that influences patients’ health in different ways, including physical, social, emotional, and psychological aspects. The goal of rheumatology care is to achieve optimal health and personalised care and therefore, it is essential to understand what health means for patients in the early course of RA. The aim of this study was to describe the understanding of health among patients with early RA.Methods: The study had a descriptive qualitative design with a phenomenographic approach. Phenomenography is used to analyse, describe, and understand various ways people understand or experience a phenomenon, in this study, patients’ understandings of health. Individual semi-structured interviews were conducted with 31 patients (22 women and nine men, aged (38–80) with early RA, defined as a disease duration of < 1 year, and disease-modifying anti-rheumatic drugs (DMARDs) for 3–7 months. The phenomenographic analysis was conducted in 7 steps, and the outcome space presents the variation in understanding and the interrelation among categories. In accordance with the European Alliance of Associations for Rheumatology’s (EULAR) recommendations, a patient research partner participated in all phases of the study.Results: The analysis revealed four main descriptive categories: ‘Health as belonging’ was described as experiencing a sense of coherence. ‘Health as happiness’ was understood as feeling joy in everyday life. ‘Health as freedom’ was understood as feeling independent. ‘Health as empowerment’ was understood as feeling capable. Essential health aspects in early RA are comprised of a sense of coherence, joy, independence, and the capability to manage everyday life.Conclusions: This study revealed that patients’ perception of health in early RA encompasses various facets, including a sense of belonging, happiness, freedom, and empowerment. It highlighted that health is multifaceted and personal, emphasizing the importance of acknowledging this diversity in providing person-centred care. The findings can guide healthcare professionals to deepen patients’ participation in treatment goals, which may lead to better treatment adherence and health outcomes. © The Author(s) 2024.
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