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ABSTRACTMedication 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.
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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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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 m2/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.
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INTRODUCTION: Systemic sclerosis (SSc) is a rare connective tissue disease causing pain, reduced mobility and decreased health-related quality of life (HRQoL). Studies suggest that exercise is a necessary adjunct to the medical treatment. PURPOSE: To examine the feasibility of a 12-week home-based exercise program for SSc patients, and evaluate changes in physical function, HRQoL and SSc-related symptoms. METHODS: Twenty patients were enrolled in the study. Feasibility was measured by adherence, adverse events, and exercise task self-efficacy. At baseline and follow-up patients completed the 6-minute walk test, 30-second sit-to-stand test, 30-second arm curl, SSc Impact of Disease (ScleroID) and 36-item short form survey (SF-36). RESULTS: Median adherence to the intervention was 36 (interquartile range 27-36) out of a total of 36 exercise sessions. Fifteen patients completed the intervention, with three dropouts. Patients' exercise task self-efficacy was 98%, 93% and 78%, for one, two and three weekly exercise sessions, respectively. There were no adverse events related to the exercise sessions. Improvements were observed in all physical tests, and minor improvements in HRQoL and SSc-related symptoms. CONCLUSION: This study suggests that a home-based exercise intervention is feasible for patients with SSc. The results suggest improvements in physical function, HRQoL and SSc-related symptoms.
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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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Qualitative Research , Research Design , Humans , Research Design/standards , Evidence-Based Medicine/standards , Evidence-Based Medicine/methods , Practice Guidelines as TopicABSTRACT
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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Arthritis, Psoriatic , Arthritis, Rheumatoid , Axial Spondyloarthritis , Humans , Female , Male , Cross-Sectional Studies , Arthritis, Psoriatic/psychology , Arthritis, Psoriatic/diagnosis , Middle Aged , Adult , Arthritis, Rheumatoid/psychology , Arthritis, Rheumatoid/diagnosis , Axial Spondyloarthritis/diagnosis , Axial Spondyloarthritis/psychology , Quality of Life , Surveys and Questionnaires , Health Knowledge, Attitudes, Practice , AgedABSTRACT
BACKGROUND: In 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. OBJECTIVE: This 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. METHODS: A 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. RESULTS: Of 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. CONCLUSIONS: This 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 REGISTRATION: ClinicalTrials.gov NCT03847766; https://clinicaltrials.gov/study/NCT03847766.
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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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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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Crystal Arthropathies , Ultrasonography , Humans , Crystal Arthropathies/diagnostic imaging , Ultrasonography/methods , Chondrocalcinosis/diagnostic imaging , Gout/diagnostic imaging , Gout/drug therapy , Magnetic Resonance Imaging/methods , Tomography, X-Ray Computed , Evidence-Based Medicine , RadiographyABSTRACT
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.
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BACKGROUND: Most patients undergoing coronary computed tomography angiography (CCTA) to diagnose coronary artery disease (CAD) are referred from general practitioners (GP). The burden in contacts to GP in relation to investigation on suspected CAD is unknown. METHODS: All patients undergoing CCTA in Western Denmark from 2014-2022 were included. CCTA stenosis was defined as diameter stenosis of ≥ 50%. Patients with and without stenosis were matched, in each group, 1:5 to a reference population based on birth-year, gender and municipality using data from national registries. All GP visits were registered in up to five years preceding and one year after the CTA and stratified by gender and age. Charlson comorbidity index (CCI) were calculated in all groups. RESULTS: Of the 62 512 patients included, 12 886 had a stenosis while 49 626 did not. Patients in both groups had a substantially higher GP visit frequency compared to reference populations. In the year of coronary CTA median GP contacts in patients with stenosis was 11 [6-17] vs. 6 [2-11] in the reference population (P < 0.001), in patients without stenosis 10 [6-17] vs. 5 [2-11] (P < 0.001). These findings were consistent across age and gender. CCI was higher among both patients with and without stenosis compared to reference groups. CONCLUSION: In patients undergoing CCTA to diagnose CAD, a substantially increased frequency of contacts to GP was observed in the five-year period prior to examination compared to the reference populations regardless of the CCTA findings. Obtaining the CCTA result did not seem to substantially affect the GP visit frequency.
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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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Arthritis, Psoriatic , Arthritis, Rheumatoid , Self-Management , Spondylarthritis , Adult , Humans , Female , Cross-Sectional Studies , Depression/epidemiology , Depression/etiology , Prevalence , Arthritis, Psoriatic/complications , Arthritis, Psoriatic/epidemiology , Arthritis, Psoriatic/therapy , Anxiety/epidemiology , Anxiety/etiology , Arthritis, Rheumatoid/complications , Arthritis, Rheumatoid/epidemiology , Arthritis, Rheumatoid/therapyABSTRACT
OBJECTIVE: To develop international consensus-based recommendations for early referral of individuals with suspected polymyalgia rheumatica (PMR). METHODS: A task force including 29 rheumatologists/internists, 4 general practitioners, 4 patients and a healthcare professional emerged from the international giant cell arteritis and PMR study group. The task force supplied clinical questions, subsequently transformed into Population, Intervention, Comparator, Outcome format. A systematic literature review was conducted followed by online meetings to formulate and vote on final recommendations. Levels of evidence (LOE) (1-5 scale) and agreement (LOA) (0-10 scale) were evaluated. RESULTS: Two overarching principles and five recommendations were developed. LOE was 4-5 and LOA ranged between 8.5 and 9.7. The recommendations suggest that (1) each individual with suspected or recently diagnosed PMR should be considered for specialist evaluation, (2) before referring an individual with suspected PMR to specialist care, a thorough history and clinical examination should be performed and preferably complemented with urgent basic laboratory investigations, (3) individuals with suspected PMR with severe symptoms should be referred for specialist evaluation using rapid access strategies, (4) in individuals with suspected PMR who are referred via rapid access, the commencement of glucocorticoid therapy should be deferred until after specialist evaluation and (5) individuals diagnosed with PMR in specialist care with a good initial response to glucocorticoids and a low risk of glucocorticoid related adverse events can be managed in primary care. CONCLUSIONS: These are the first international recommendations for referral of individuals with suspected PMR, which complement the European Alliance of Associations for Rheumatology/American College of Rheumatology management guidelines for established PMR.
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BACKGROUND: Patients 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. OBJECTIVE: The 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. METHODS: The 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 <2.1) and on stable treatment with a tumor necrosis factor inhibitor. Participants were randomized 1:1:1 to arm A (usual care, face-to-face visits every sixth month), arm B (remote monitoring, monthly digital registration of patient-reported outcomes), or arm C (patient-initiated care, self-monitoring, no planned visits during the study period). The primary end point was disease activity measured with the Ankylosing Spondylitis Disease Activity Score, evaluated at 6, 12, and 18 months. We aimed to include 240 patients, 80 in each arm. Secondary end points included other measures of disease activity, patient satisfaction, safety, and cost-effectiveness. RESULTS: The project is funded by the South-Eastern Norway Regional Health Authority and Centre for the treatment of Rheumatic and Musculoskeletal Diseases (REMEDY), Diakonhjemmet Hospital, Norway. Enrollment started in September 2021 and was completed with 242 patients by June 2022. The data collection will be completed in December 2023. CONCLUSIONS: To our knowledge, this trial will be among the first to evaluate the effectiveness, safety, and cost-effectiveness of remote digital monitoring and self-monitoring of patients with axial spondyloarthritis compared with usual care. Hence, the ReMonit study will contribute important knowledge to personalized follow-up strategies for patients with axial spondyloarthritis. These results may also be relevant for other patient groups with inflammatory joint diseases. TRIAL REGISTRATION: ClinicalTrials.gov NCT05031767; hpps://www.clinicaltrials.gov/study/NCT05031767. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52872.
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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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OBJECTIVE: To explore patients' perceptions of digital patient education (PE), and how this contributes to self-management of rheumatoid arthritis (RA). METHODS: Individual interviews based on 'interpretive description' methodology. The patients were purposively selected from a randomized controlled trial that investigated the effects of digital PE. The analysis included a descriptive section, followed by the interpretation and extraction of the main messages. RESULTS: Overall, participants had positive perceptions of the e-learning program. Advantages were flexibility, the possibility for repetition, entertainment, availability, and learning in familiar surroundings. Disadvantages were unmet relational support needs due to missing dialogue with health care providers (HCPs). For the majority, a need for insight into the condition led to an active approach to using e-learning. The e-learning program facilitated knowledge acquisition about RA, but relational support from HCPs and a positive attitude toward living with RA were also important for achieving self-management. CONCLUSION: Digital PE is useful for self-management support in RA, however different forms and combinations of PE must be offered in the future to accommodate various needs throughout the disease course. PRACTICE IMPLICATIONS: These results may inform future development and implementation of digital PE that adequately takes individual preferences for self-management support into account.
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Arthritis, Rheumatoid , Self-Management , Humans , Patient Education as Topic , Qualitative Research , Learning , Arthritis, Rheumatoid/therapyABSTRACT
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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Health Personnel , Rheumatology , Health Personnel/education , Rheumatology/education , Education, Continuing , Europe , Surveys and Questionnaires , Humans , Male , Female , Curriculum , Pediatrics/education , Education, DistanceABSTRACT
OBJECTIVE: To identify socioeconomic, disease-related, and personal factors associated with participation in remote follow-up in patients with rheumatoid arthritis (RA). METHODS: Following the implementation of a patient-reported outcome-based remote follow-up intervention in RA patients in Denmark, a cross-sectional study was conducted among 775 prevalent patients. In 2019, an electronic questionnaire was sent to eligible RA patients, covering health literacy and patient experience regarding involvement and confidence with remote care. Questionnaire data were linked to nationwide registries regarding socioeconomic status, labor market affiliation, and comorbidity level. Associations between registry- and questionnaire-based factors and remote follow-up were analyzed using multiple logistic regression analysis. RESULTS: All 775 patients were included in the registry-based analyses, but only 394 of 646 (61%) completed the questionnaire. No attachment to the labor market or low household income was associated with lower odds of remote follow-up participation (odds ratio [OR] 0.53 [95% confidence interval (95% CI) 0.34-0.83]) and (OR 0.69 [95% CI 0.48-1.00]). Further, a high level of comorbidity was associated with lower odds of remote follow-up participation compared to a low/medium level of comorbidity (OR 0.53 [95% CI 0.34-0.81]). No association was found between health literacy and remote follow-up, but remote follow-up attendees reported more confidence in remote care (OR 1.33 [95% CI 1.21-1.47]). CONCLUSION: Participation in remote follow-up was associated with attachement to the labor market, household income, degree of comorbidity, and confidence with remote care. Additional research is necessary to investigate whether a larger and more divergent group of RA patients should be considered for inclusion in remote follow-up programs.
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Arthritis, Rheumatoid , Humans , Cross-Sectional Studies , Follow-Up Studies , Arthritis, Rheumatoid/diagnosis , Arthritis, Rheumatoid/epidemiology , Social Class , ComorbidityABSTRACT
BACKGROUND: Patient-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. OBJECTIVES: This study aimed to explore the patients' experiences using PROs in remote care and how this mode of follow-up may enhance patient engagement. DESIGN: A qualitative approach was employed, guided by Focused Ethnography and Interpretive Description. PARTICIPANTS: Purposively, 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. MEASURES: Field 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. RESULTS: PRO-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. CONCLUSION: PRO-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.
Subject(s)
Remote Consultation , Renal Insufficiency, Chronic , Humans , Follow-Up Studies , Delivery of Health Care , Renal Insufficiency, Chronic/therapy , Qualitative Research , Patient Reported Outcome MeasuresABSTRACT
BACKGROUND: Patient-reported Outcome (PRO) measures may be used as the basis for out-patient follow-up instead of fixed appointments. The patients attend follow-up from home by filling in questionnaires developed for that specific aim and patient group (telePRO). The questionnaires are handled in real time by a specific algorithm, which assigns an outcome color reflecting clinical need. The specific questionnaires and algorithms (named solutions) are constructed in a consensus process with clinicians. We aimed to describe AmbuFlex' telePRO solutions and the algorithm outcomes and variation between patient groups, and to discuss possible applications and challenges. METHODS: TelePRO solutions with more than 100 processed questionnaires were included in the analysis. Data were retrieved together with data from national registers. Characteristics of patients, questionnaires and outcomes were tabulated for each solution. Graphs were constructed depicting the overall and within-patient distribution of algorithm outcomes for each solution. RESULTS: From 2011 to 2021, 29 specific telePRO solutions were implemented within 24 different ICD-10 groups. A total of 42,015 patients were referred and answered 171,268 questionnaires. An existing applicable instrument with cut-off values was available for four solutions, whereas items were selected or developed ad hoc for the other solutions. Mean age ranged from 10.7 (Pain in children) to 73.3 years (chronic kidney disease). Mortality among referred patients varied between 0 (obesity, asthma, endometriosis and pain in children) and 528 per 1000 patient years (Lung cancer). There was substantial variation in algorithm outcome across patient groups while different solutions within the same patient group varied little. DISCUSSION: TelePRO can be applied in diseases where PRO can reflect clinical status and needs. Questionnaires and algorithms should be adapted for the specific patient groups and clinical aims. When PRO is used as replacement for clinical contact, special carefulness should be observed with respect to patient safety.