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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.
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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.
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Investigación Cualitativa , Proyectos de Investigación , Humanos , Proyectos de Investigación/normas , Medicina Basada en la Evidencia/normas , Medicina Basada en la Evidencia/métodos , Guías de Práctica Clínica como AsuntoRESUMEN
Introduction: Chronic non-cancer pain (CNCP) is a lifelong condition with radical consequences, calling for management involving patients' families. Interventions based on the family systems nursing framework by Wright and Leahey have proved beneficial in other populations but require investigation in a CNCP population. This trial assumed that family nursing conversations (FNCs) based on the family systems nursing framework would increase patients' and family members' self-efficacy concerning CNCP management. Objective: To investigate whether an intervention with FNCs as an add-on to the usual multidisciplinary treatment of CNCP would have an effect on patients' and family members' self-efficacy. Additionally, to investigate any impact on family function, health-related quality of life, anxiety, and depression. Methods: The trial applied a prospective non-blinded quasi-experimental design with two comparable groups of patients and family members: a historical control group (HCG) and an intervention group (IG). The intervention was executed by nurses employed at a multidisciplinary pain center in the Capital Region of Denmark. HCG data were collected before the nurses' intervention training. The primary outcome was self-efficacy. Secondary outcomes were family function, health-related quality of life, anxiety, and depression. Results: In total, 58 patients and 85 family members were included. The primary outcome, self-efficacy, detected no statistically significant between-group differences in mean change for patients, p = .990, or family members, p = .765. A statistically significant effect in favor of the IG was found in between-group differences in mean change in patients' behavioral family function, p = .034, and anxiety, p = .031. No statistically significant between-group differences were detected in family members' secondary outcomes. Conclusion: The intervention had no effect on patients' or family members' self-efficacy but a positive effect on patients' behavioral family function and anxiety. The intervention was deeply affected by the COVID-19 pandemic. Hence, any results should be interpreted with caution.
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OBJECTIVES: To examine the effect of an early postsurgical intervention consisting of graded activity and pain education (GAPE) in patients with chronic low back pain (CLBP) undergoing lumbar spinal fusion (LSF) on sedentary behavior, disability, pain, fear of movement, self-efficacy for exercise and health-related quality of life (HRQoL) at 3-, 6-, and 12 months follow-up. DESIGN: A parallel-group, observer-blinded randomized controlled trial. SETTING: Department of Occupational- and Physiotherapy and the Centre for Rheumatology and Spine Diseases, Rigshospitalet, Denmark. PARTICIPANTS: In total, 144 participants undergoing an LSF for CLBP were randomly assigned to an intervention or a control group. INTERVENTIONS: The intervention group received 9 sessions of GAPE, based on principles of operant conditioning. MAIN OUTCOME MEASURES: The primary outcome was reduction in time spent in sedentary behavior, measured by an accelerometer at 3 months. The secondary outcomes were reduction in time spent in sedentary behavior at 12 months and changes from baseline to 3-, 6-, and 12 months on disability, pain, fear of movement, self-efficacy for exercise, and HRQoL. RESULTS: No difference in changes in sedentary behavior between groups was found 3 months after surgery. At 12 months after surgery, there was a significant difference between groups (mean difference: -25.4 min/d (95% confidence interval -49.1 to -1.7)) in favor of the intervention group. CONCLUSIONS: Compared with usual care, GAPE had no effect on short-term changes in sedentary behavior but GAPE had a statistical, but possibly not clinical significant effect on sedentary behavior 12 months after LSF. Further, the behavioral intervention was safe to perform.
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Miedo , Dolor de la Región Lumbar , Vértebras Lumbares , Calidad de Vida , Conducta Sedentaria , Autoeficacia , Fusión Vertebral , Humanos , Masculino , Femenino , Persona de Mediana Edad , Dolor de la Región Lumbar/rehabilitación , Vértebras Lumbares/cirugía , Educación del Paciente como Asunto/métodos , Adulto , Evaluación de la Discapacidad , Método Simple Ciego , Terapia por Ejercicio/métodos , Dolor Crónico/rehabilitaciónRESUMEN
When newly diagnosed with inflammatory arthritis (IA), acquiring self-management skills is beneficial, to enhance quality of life. The personal beliefs and mental representations patients hold about their illness, known as illness perception, significantly influence the development of these skills. Recognizing characteristics that affect illness perception is key to identifying patients requiring additional support for the development of self-management skills. This study aimed at identifying the sociodemographic and clinical characteristics associated with a negative illness perception. This cross-sectional study was based on survey data from patients diagnosed for ≤ 2 years. The Brief Illness Perception Questionnaire (B-IPQ) was used to measure illness perception. After psychometric testing, we divided the B-IPQ into two domains: (1) a control domain and (2) a consequence domain. We performed logistic regression analyses with multiple imputations. A total of 1,360 patients (61% females) were included. Among them, 64%, 20%, and 16% were diagnosed with rheumatoid arthritis, psoriatic arthritis (PsA) and axial spondyloarthritis (axSpA), respectively. Younger patients with lower socioeconomic status, a diagnosis of PsA or axSpA, high disease activity (OR 3.026, CI 2.208;4.147), severe physical disability (OR 4.147. CI 2.883;6.007), severe pain (OR 3.034, CI 1.991;4.622), and severe fatigue (OR 2.612, CI 1.942;3.513) were significantly more likely to report having a negative illness perception. Younger patients with a higher symptom burden, increased disease activity, lower socioeconomic status, and a diagnosis of PsA or axSpA may require additional attention and support in rheumatology clinical practice to aid in the development of their self-management skills.
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Artritis Psoriásica , Artritis Reumatoide , Espondiloartritis Axial , Humanos , Femenino , Masculino , Estudios Transversales , Artritis Psoriásica/psicología , Artritis Psoriásica/diagnóstico , Persona de Mediana Edad , Adulto , Artritis Reumatoide/psicología , Artritis Reumatoide/diagnóstico , Espondiloartritis Axial/diagnóstico , Espondiloartritis Axial/psicología , Calidad de Vida , Encuestas y Cuestionarios , Conocimientos, Actitudes y Práctica en Salud , AncianoRESUMEN
OBJECTIVE: New modes of action and more data on the efficacy and safety of existing drugs in psoriatic arthritis (PsA) required an update of the EULAR 2019 recommendations for the pharmacological treatment of PsA. METHODS: Following EULAR standardised operating procedures, the process included a systematic literature review and a consensus meeting of 36 international experts in April 2023. Levels of evidence and grades of recommendations were determined. RESULTS: The updated recommendations comprise 7 overarching principles and 11 recommendations, and provide a treatment strategy for pharmacological therapies. Non-steroidal anti-inflammatory drugs should be used in monotherapy only for mild PsA and in the short term; oral glucocorticoids are not recommended. In patients with peripheral arthritis, rapid initiation of conventional synthetic disease-modifying antirheumatic drugs is recommended and methotrexate preferred. If the treatment target is not achieved with this strategy, a biological disease-modifying antirheumatic drug (bDMARD) should be initiated, without preference among modes of action. Relevant skin psoriasis should orient towards bDMARDs targeting interleukin (IL)-23p40, IL-23p19, IL-17A and IL-17A/F inhibitors. In case of predominant axial or entheseal disease, an algorithm is also proposed. Use of Janus kinase inhibitors is proposed primarily after bDMARD failure, taking relevant risk factors into account, or in case bDMARDs are not an appropriate choice. Inflammatory bowel disease and uveitis, if present, should influence drug choices, with monoclonal tumour necrosis factor inhibitors proposed. Drug switches and tapering in sustained remission are also addressed. CONCLUSION: These updated recommendations integrate all currently available drugs in a practical and progressive approach, which will be helpful in the pharmacological management of PsA.
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Antirreumáticos , Artritis Psoriásica , Artritis Psoriásica/tratamiento farmacológico , Humanos , Antirreumáticos/uso terapéutico , Antiinflamatorios no Esteroideos/uso terapéutico , Metotrexato/uso terapéutico , Productos Biológicos/uso terapéuticoRESUMEN
OBJECTIVES: To obtain an overview of recent evidence on efficacy and safety of pharmacological treatments in psoriatic arthritis (PsA). METHODS: This systematic literature research (SLR) investigated the efficacy and safety of conventional synthetic (cs), biological (b) and targeted synthetic (ts) disease-modifying antirheumatic drugs (DMARDs) in patients with PsA. A systematic database search using Medline, EMBASE, Cochrane CENTRAL was conducted to identify relevant articles published since the previous update in 2019 until 28 December 2022. Efficacy was assessed in trials while for safety observational data were also considered. Adverse events of special interest were infections (including herpes zoster, influenza and tuberculosis), malignancies, major adverse cardiovascular events, venous thromboembolisms, liver disease, laboratory changes and psychiatric adverse events. No meta-analyses were performed. RESULTS: For efficacy, of 3946 articles screened, 38 articles (30 trials) were analysed. The compounds investigated included csDMARDs (leflunomide, methotrexate), bDMARDs inhibiting IL17 (bimekizumab, brodalumab, ixekizumab, izokibep, secukinumab,), IL-23 (guselkumab, risankizumab, tildrakizumab), IL-12/23 (ustekinumab) as well as TNF (adalimumab, certolizumab-pegol, etanercept, infliximab, golimumab) and Janus Kinase inhibitors (JAKi) (brepocitinib, deucravacitinib, tofacitinib, upadacitinib). The compounds investigated were efficacious in improving signs and symptoms of PsA, improving physical functioning and quality of life. For safety, 2055 abstracts were screened, and 24 articles analysed: 15 observational studies and 9 long-term follow-ups of trials, assessing glucocorticoids, TNFi, IL-17i, JAKi, IL-12/23i and PDE4i (apremilast). Safety indicators were generally coherent with the previous SLR in 2019. CONCLUSION: The results of this SLR informed the task force responsible for the 2023 update of the European Alliance of Associations for Rheumatology recommendations for pharmacological management of PsA.
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Antirreumáticos , Artritis Psoriásica , Artritis Psoriásica/tratamiento farmacológico , Humanos , Antirreumáticos/uso terapéutico , Resultado del Tratamiento , Guías de Práctica Clínica como Asunto , Productos Biológicos/uso terapéuticoRESUMEN
Physical activity (PA) is recommended as a key component in the management of people with rheumatoid arthritis (RA). The objective of this study was to examine the feasibility of a physiotherapist led, behaviour change (BC) theory-informed, intervention to promote PA in people with RA who have low levels of current PA. A feasibility randomised trial (ClinicalTrials.gov NCT03644160) of people with RA over 18 years recruited from outpatient rheumatology clinics and classified as insufficiently physically active using the Godin-Shephard Leisure Time Physical Activity Questionnaire. Participants were randomised to intervention group (4 BC physiotherapy sessions in 8 weeks) delivered in person/virtually or control group (PA information leaflet only). Feasibility targets (eligibility, recruitment, and refusal), protocol adherence and acceptability were measured. Health care professionals (HCPs) involved in the study and patients in the intervention and control arms were interviewed to determine acceptability. Descriptive statistics were used to analyse the data with SPSS (v27) with interviews analysed using content analysis using NVivo (v14). Three hundred and twenty participants were identified as potentially eligible, with n = 183 (57%) eligible to participate, of which n = 58 (32%) consented to participate. The recruitment rate was 6.4 per month. Due to the impact of COVID-19 on the study, recruitment took place over two separate phases in 2020 and 2021. Of the 25 participants completing the full study, 23 were female (mean age 60 years (SD 11.5)), with n = 11 allocated to intervention group and n = 14 to control. Intervention group participants completed 100% of sessions 1 & 2, 88% of session 3 and 81% of session 4. The study design and intervention were acceptable overall to participants, with enhancements suggested. The PIPPRA study to improve promote physical activity in people with RA who have low PA levels was feasible, acceptable and safe. Despite the impact of COVID-19 on the recruitment and retention of patients, the study provides preliminary evidence that this physiotherapist led BC intervention is feasible and a full definitive intervention should be undertaken. Health care professionals involved in the study delivery and the patient participants described a number of positive aspects to the study with some suggestions to enhance the design. These findings hence inform the design of a future efficacy-focused clinical trial.
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Artritis Reumatoide , COVID-19 , Fisioterapeutas , Femenino , Humanos , Masculino , Persona de Mediana Edad , Artritis Reumatoide/diagnóstico , Artritis Reumatoide/terapia , Ejercicio Físico , Estudios de Factibilidad , AncianoRESUMEN
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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AIM: To identify barriers and facilitators impacting the implementation of a comprehensive transfer program aimed at parents of adolescents with chronic illness in clinical practice. DESIGN: A real-time, qualitative process evaluation. METHODS: Individual interviews were conducted with 10 nurses and seven physicians from paediatric and adult outpatient clinics: Nephrology, hepatology, neurology, and rheumatology. Data were analysed through the lens of normalization process theory. RESULTS: Themes were framed within the theory's four components. (1) Coherence: Healthcare professionals' views on their core tasks and on the parents' role influenced their perception of the program. (2) Cognitive participation: A named key worker, autonomy, and collaboration impacted healthcare professionals' involvement in the program. (3) Collective action: Department prioritization and understanding of the program's aim were key factors in its successful delivery. (4) Reflective monitoring: Participants experienced that the program helped parents during transfer but questioned if the program was needed by all families. CONCLUSION: We identified three barriers: Healthcare professionals' lack of understanding of the parental role during transfer, top-down decisions among nurses, and physicians' uncertainty about their role in joint consultations. Facilitators: Healthcare professionals' understanding of the program's purpose and expected effect, the nurses' significant role as named keyworkers, and good collaboration across paediatric and adult departments. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Implementation strategies should be developed before implementing a transfer program in clinical practice. IMPACT: Implementing a parental transfer program in clinical practice can be challenging. Therefore, for successful implementation, it is crucial to identify barriers and facilitators. Barriers and facilitators exist at the personal, professional, and organizational levels, and it is important to understand them. The results of this qualitative study could support the implementation of transfer programs in other settings. REPORTING METHOD: Consolidated criteria for reporting qualitative studies (COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Nurses' and physicians' experiences of ownership of the transfer program is essential for successful implementation. Clinics should appoint a named keyworker, preferably a nurse, as the driving force during the implementation of a transfer program. Nurses and physicians should receive training about the purpose, justification, and expected effect of a transfer program before implementation.
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Actitud del Personal de Salud , Padres , Humanos , Enfermedad Crónica , Padres/psicología , Adolescente , Masculino , Femenino , Adulto , Persona de Mediana Edad , Investigación Cualitativa , Médicos/psicologíaRESUMEN
Objective: The purpose of this study was to explore the experiences of people with RA of participating in an exercise intervention to improve their sleep. Methods: Using a qualitative descriptive design, semi-structured face-to-face interviews were conducted with 12 people with RA who had completed an 8-week walking-based exercise intervention to improve their total sleep time, sleep quality and sleep disturbance. Data were analysed using thematic analysis. Results: Four themes were generated: positive impact of exercise on participants' sleep ('I really didn't think any type of exercise would help me sleep better, if I'm honest'); positive experiences of the exercise intervention ('I learnt so much regarding walking that I didn't even think about'); clear mental health benefits ('If you don't sleep well then it will have a knock-on effect to your mental health'); and achieving empowerment and ownership when exercising ('I feel empowered now and confident that I'm not doing harm to myself'). Conclusion: The findings demonstrated that participants had not expected exercise to improve their sleep. Although there is a growing consensus that exercise will benefit sleep and mitigate some disease symptoms, research is severely lacking in people with RA.
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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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Artritis Psoriásica , Artritis Reumatoide , Automanejo , Espondiloartritis , Adulto , Humanos , Femenino , Estudios Transversales , Depresión/epidemiología , Depresión/etiología , Prevalencia , Artritis Psoriásica/complicaciones , Artritis Psoriásica/epidemiología , Artritis Psoriásica/terapia , Ansiedad/epidemiología , Ansiedad/etiología , Artritis Reumatoide/complicaciones , Artritis Reumatoide/epidemiología , Artritis Reumatoide/terapiaRESUMEN
BACKGROUND: Apart from a consistent focus on treating inflammation, patients with inflammatory arthritis (IA) report a range of unmet needs. Many experience not only residual symptoms but also various other physical, psychological, and social effects. Therefore, this study aimed to develop a complex Interdisciplinary Nurse-coordinated self-management (INSELMA) intervention for patients with IA, as an add-on treatment to usual outpatient care for those with substantial disease impact. METHODS: This study followed the British Medical Research Council's updated framework for developing complex interventions. The process encompassed the following steps: (1) The evidence base was identified; (2) workshops were held, involving 38 relevant stakeholders (managers, physicians, nurses, physiotherapists, occupational therapists, social workers, psychologists from hospitals and municipalities, and two patient research partners), to discuss and further develop the preliminary ideas; (3) relevant theories were identified (i.e., self-efficacy, acceptance and commitment therapy, and health literacy); (4) the intervention was modeled and remodeled and (5) the results, describing the final INSELMA intervention and outcomes. RESULTS: The INSELMA intervention encompasses an initial biopsychosocial assessment, which is performed by a rheumatology nurse. Then, activities that the participant wishes to improve are identified and goals are set. The nurse refers the participant to a multidisciplinary team and coordinates their support and relevant services in the participant's municipality. In addition, the health professionals have the opportunity to hold two interdisciplinary conferences during the intervention period. The participant and the health professionals work to achieve the set goals during a 6-month period, which ends with a status assessment and a discussion of further needs. The INSELMA intervention aims to increase self-management, reduce the impact of IA (e.g., pain, fatigue, sleep problems, and absenteeism), and increase self-efficacy, quality of life, mental well-being, work ability, and physical activity. CONCLUSIONS: The development of the INSELMA intervention involved stakeholders from two Danish rheumatology outpatient clinics, patient research partners and municipalities. We believe that we have identified important mechanisms to increase the self-management and quality of life of people with IA and to decrease the disease impact in those who are substantially affected. The health professionals involved have developed competences in delivering the intervention and it is ready to be tested in a feasibility study.
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Terapia de Aceptación y Compromiso , Artritis , Automanejo , Humanos , Calidad de Vida , Artritis/terapia , Salud MentalRESUMEN
Higher proportions of patients with rheumatoid arthritis (RA) are physically inactive compared to the general population. A barrier to engaging in physical activity (PA) may be lack of consistent PA guidance from health professionals (HPRs). This qualitative study aimed to explore daily PA levels and the patients' perspectives on current and future PA guidance from HPRs. We recruited 20 participants from five rheumatology departments in Denmark. The participants differed in socio-demography and clinical characteristics based on results from an earlier cross-sectional study. The interviews were conducted by telephone, online platforms or face-to-face. Data analysis was based on reflexive thematic analysis. Thirteen participants were female and mean age was 55 years. We generated four themes; (1) Acceptance of the arthritis is a process, which attributed to acknowledging RA as part of life before fully engagement in PA and exercise. (2) Daily physical activity-motivation, barriers and benefits, reflecting the participants' preferred types of activities and motivations and barriers to PA. (3) Physical activity guidance-your own responsibility? This theme reflected how participants missed more comprehensive discussions with HPRs about PA. (4) It is essential how, when and where physical activity guidance is provided, referring to participants' preferences for future PA guidance in the rheumatology clinic. The study emphasizes that an integrated focus on PA should be part of the rheumatology clinic. However, HPRs may need adequate training in how to guide and motivate patients with RA towards increased PA.
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Artritis Reumatoide , Reumatología , Humanos , Femenino , Persona de Mediana Edad , Masculino , Estudios Transversales , Investigación Cualitativa , Ejercicio Físico , Artritis Reumatoide/diagnóstico , Artritis Reumatoide/terapiaRESUMEN
Purpose: To explore patients' and family members' experiences of participating in an intervention using nurse-led family nursing conversations (NLFCs) targeting families affected by chronic non-cancer pain (CNCP), including the perceived impact of the intervention on the individual and the family. CNCP substantially impacts patients and families. Due to a lack of simple treatment solutions, the condition needs to be managed rather than cured. Family involvement seems a promising tool, but research evaluating specific approaches is limited. Interventions based on the family systems nursing framework by Wright and Leahey have been helpful in other populations. Nonetheless, the approach warrants further investigation and evaluation in patients with CNCP. Patients and Methods: A phenomenological hermeneutical design was applied, and individual interviews were conducted with ten patients and ten family members who received the intervention. The analysis was inspired by Ricoeur's philosophy of text interpretation. Findings: Three themes emerged during the analysis. "Taking part in the intervention while being affected by previous experiences" showed that patients and family members were affected by different experiences and burdens and therefore entered the intervention with varied starting points. "Being empowered through validation and understanding" showed that participants mainly viewed the intervention as beneficial, increasing patients' and family members' mutual understanding and underpinning acceptance of the chronic pain condition. "Being receptive to the intervention - mechanisms contributing to achieving benefit" identified contributing mechanisms influencing patients' and family members' experiences of the intervention. These mechanisms included confidence in the nurses' facilitation of the intervention, the timing of the intervention, the participant's level of acceptance, and readiness to engage in the intervention. Conclusion and Relevance to Clinical Practice: The intervention was mainly experienced as helpful. Thus, healthcare settings treating CNCP should consider implementing NLFC in clinical practice with adjustments to meet the vulnerability of the CNCP population.
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AIM: Early assessment of patient preferences has the potential to support shared decisions in personalized precision medicine for patients with rheumatoid arthritis (RA). The aim of this study was to assess treatment preferences of patients with RA (< 5 years) with previous experience of inadequate response to first-line monotherapy. METHOD: Patients were recruited (March-June 2021) via four clinics in Sweden. Potential respondents (N = 933) received an invitation to answer a digital survey. The survey included an introductory part, a discrete choice experiment (DCE) and demographic questions. Each respondent answered 11 hypothetical choice questions as part of the DCE. Patient preferences and preference heterogeneity were estimated using random parameter logit models and latent class analysis models. RESULTS: Patients (n = 182) assessed the most important treatment attributes out of physical functional capacity, psychosocial functional capacity, frequency of mild side effects and likelihood of severe side effects. In general, patients preferred a greater increase in functional capacity and decreased side effects. However, a substantial preference heterogeneity was identified with two underlying preference patterns. The most important attribute in the first pattern was the 'likelihood of getting a severe side effect'. Physical functional capacity was the most important attribute in the second pattern. CONCLUSION: Respondents focused their decision-making mainly on increasing their physical functional capacity or decreasing the likelihood of getting a severe side effect. These results are highly relevant from a clinical perspective to strengthen communication in shared decision making by assessing patients' individual preferences for benefits and risks in treatment discussions.
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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.
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Artritis , Automanejo , Humanos , Artritis/terapiaRESUMEN
OBJECTIVES: Self-monitoring of physical activity (PA) has the potential to contribute to successful behaviour change in PA interventions in different populations, including people with inflammatory joint diseases (IJDs). The objectives of this study were to describe the use and knowledge of self-report-based and device-based PA measures in people with IJDs in four European countries, and to explore if the use of such devices, sociodemographic or disease-related variables were associated with adherence to the recommendations of at least 150 min of moderate to vigorous PA per week. SETTING: Cross-sectional survey, performed in 2015-2016. PARTICIPANTS: People with IJDs in Belgium, Denmark, Ireland and Sweden. PRIMARY AND SECONDARY OUTCOME MEASURES: Use of self-report and device-based PA measures, receipt of instructions how to use PA measures, confidence in using them, adherence to PA recommendations and associated factors for adherence to PA recommendations. RESULTS: Of the 1305 respondents answering questions on PA measures, 600 (46%) reported use of any kind of self-report or device-based measures to self-monitor PA. Between country differences of 34%-58% was observed. Six per cent and four per cent received instructions from health professionals on how to use simple and complex devices, respectively. Independent associated factors of fulfilment of recommendations of PA were living in Ireland (OR=84.89, p<0.001) and Sweden (OR=1.68, p=0.017) compared with living in Denmark, not perceiving activity limitations in moderate activities (OR=1.92, p<0.001) and using a device to measure PA (OR=1.56, p<0.001). Those living in Belgium (OR=0.21, p<0.001) were less likely to fulfil recommendations of PA. CONCLUSIONS: Almost half of the participants with IJDs used self-report-based or deviced-based PA measures, although few used wearable devices regularly. The results indicate that participants meeting public PA health guidelines were engaged in self-monitoring of PA.
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Ejercicio Físico , Artropatías , Humanos , Autoinforme , Estudios Transversales , Europa (Continente)RESUMEN
INTRODUCTION: Physical activity (PA) is an important component in improving the health of people with rheumatoid arthritis (RA). A Physiotherapist-led Intervention to Promote PA in people with RA (PIPPRA) was undertaken using the Behaviour Change (BC) Wheel. A qualitative study was conducted post intervention involving participants and healthcare professionals who participated in a pilot RCT. METHODS: Face-to-face semi-structured interviews were conducted with the schedule exploring: experience and views of the intervention; experience and suitability of outcome measures used; and perceptions of BC and PA. Thematic analysis was used as an analytical approach. The COREQ checklist provided guidance throughout. RESULTS: Fourteen participants and eight healthcare staff participated. Three main themes were generated from participants: (1) positive experience of intervention - 'I found it very knowledgeable to help me get stronger'; (2) improvement in self-management - ' motivate me maybe to go back to doing a little bit more exercise'; and (3) negative impact of COVID-19 - 'I don't think doing it online again would be really good at all'. Two main themes were generated from healthcare professionals: (1) positive learning experience of delivery - 'Really made me realise the importance of discussing physical activity with patients'; and (2) positive approach to recruitment - 'Very professional team showing the importance of having a study member on site'. DISCUSSION: Participants had a positive experience of being involved in a BC intervention in order to improve their PA and found it acceptable as an intervention. Healthcare professionals also had a positive experience, in particular the importance of recommending PA in empowering patients.
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Artritis Reumatoide , COVID-19 , Fisioterapeutas , Humanos , Artritis Reumatoide/terapia , Ejercicio Físico , Investigación CualitativaRESUMEN
INTRODUCTION: Physical activity (PA) interventions incorporating behaviour change (BC) theory are needed to improve PA levels in people with rheumatoid arthritis. A pilot feasibility study of a Physiotherapist-led Intervention to Promote PA in Rheumatoid Arthritis (PIPPRA) was undertaken to obtain estimates for recruitment rate, participant retention and protocol adherence. METHODS: Participants were recruited at University Hospital (UH) rheumatology clinics and randomly assigned to control group (physical activity information leaflet) or intervention group (four BC physiotherapy sessions in 8 weeks). Inclusion criteria were diagnosis of RA (ACR/EULAR 2010 classification criteria), aged 18+ years and classified as insufficiently physically active. Ethical approval was obtained from the UH research ethics committee. Participants were assessed at baseline (T0), 8 weeks (T1) and 24 weeks (T2). Descriptive statistics and t-tests were used to analyse the data with SPSS v22. RESULTS: 320 participants were approached about the study with n=183 (57%) eligible to participate and n=58 (55%) consented to participate (recruitment rate: 6.4 per month; refusal rate 59%). Due to the impact of COVID-19 on the study, n=25 (43%) participants completed the study (n=11 (44%) intervention and n=14 (56%) control). Of the 25, n=23 (92%) were female, mean age was 60 years (s.d. 11.5). Intervention group participants completed 100% of BC sessions 1 and 2, 88% completed session 3 and 81% completed session 4. DISCUSSION: The intervention to promote physical activity was feasible and safe and provides a framework for larger intervention studies. Based on these findings, a fully powered trial is recommended.