BackgroundRemote care and telehealth have the potential to expand healthcare access, and the COVID-19 pandemic has called for alternative solutions to conventional face-to-face follow-up and monitoring. However, guidance is needed on the integration of telehealth into clinical care of people with rheumatic and musculoskeletal diseases (RMD).ObjectiveTo develop EULAR points to consider (PtC) for the development, prioritisation and implementation of telehealth for people with RMD.MethodsA multidisciplinary EULAR task force (TF) of 30 members from 14 European countries was established, and the EULAR standardised operating procedures for development of PtC were followed. A systematic literature review was conducted to support the TF in formulating the PtC. The level of agreement among the TF was established by anonymous online voting.ResultsFour overarching principles and nine PtC were formulated. The use of telehealth should be tailored to patient’s needs and preferences. The healthcare team should have adequate equipment and training and have telecommunication skills. Telehealth can be used in screening for RMD as preassessment in the referral process, for disease monitoring and regulation of medication dosages and in some non-pharmacological interventions. People with RMD should be offered training in using telehealth, and barriers should be resolved whenever possible.The level of agreement to each statement ranged from 8.5 to 9.8/10.ConclusionThe PtC have identified areas where telehealth could improve quality of care and increase healthcare access. Knowing about drivers and barriers of telehealth is a prerequisite to successfully establish remote care approaches in rheumatologic clinical practice.

The participants had positive perceptions of the PRO-based telehealth followup and saw it as a flexible and resource-saving solution. They reported disadvantages related to missing face-to-face contact with health professionals. The 2 typologies, the keen and the reluctant patient, help us understand the patients' different needs, wishes, and abilities to take part in telehealth followup. Our findings reveal a need for more insight into how telehealth followup could be integrated in routine clinical practice, paying special attention to how reluctant patients may be supported.

Background Juvenile idiopathic arthritis (JIA) is a chronic disease affecting 1200 children in Denmark (1). Due to differences in the organization of the paediatric and adult setting, and a change in roles between the child and it's parents, the transition from the paediatric to the adult setting can be challenging for adolescents with JIA (2, 3). However, little is known about promotive factors for successful JIA transition since few studies have explored the patient perspective and perception in the field. Objectives To explore the transition from the paediatric to the adult setting from the perspective of adolescents with JIA, and to discover important factors in successful transition. Methods Data was conducted through qualitative interviews with three adolescents with JIA aged 19 – 23 years with a disease duration from 10 – 21 years. A semi structured interview guide was applied comprising the following terms: Overall experience of transition, preparation for the transition, cultural differences and the impression of and collaboration with doctors and nurses. The interviews were taped, transcribed verbatim and analysed using inductive content analysis. Results Seven main categories described experiences with transition: The first encounter with the adult ward, The experience of an inadequate preparation for the transition, Differences between the child and adult world, The impression of and collaboration with doctors and nurses, Needs and challenges related to development, Parent participation and The development of responsibility and independence. Conclusions Transition is challenging for adolescents due to an inadequate preparation and to cultural differences between the pediatric and adult setting. Data suggest that the gap can be minimized by a better preparation, including a gradual involvement of the adolescent in the process, planned start-up at the adult ward and appointment of contact persons. References Gigtforeningen. [online]. 2013 [Cited 2014 January 23]; Available from: Shaw KL, Southwood TR, McDonagh JE. User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology 2004 Jun;43(6):770-78. Östlie IL, Dale Ö, Möller A. From childhood to adult life with juvenile idiopathic arthritis (JIA): A pilot study. Disabil Rehabil 2007 Mar;29(6):445-52. Acknowledgements Thanks to the departmental management at the Department of Rheumatology AUH and Senior Reacher, Ph.D. Annette de Thurah for support and guidance. Disclosure of Interest None declared DOI 10.1136/annrheumdis-2014-eular.1455

AimThe aim of this study was to investigate experiences and needs in the transition from child to adult care in an outpatient clinic from the perspective of adolescents with juvenile idiopathic arthritis and their parents focusing on which aspects in the transition could ease the process.DesignA qualitative design with an inductive approach.MethodsInductive content analysis was used to analyse individual interviews with three parents and three adolescents from a rheumatology clinic in Denmark.ResultsThree descriptive categories emerged: “Information during transition,” “Personalized care” and “A change of roles.” The comparative analysis of the categories revealed two explanatory themes: “To move from something known to something unknown” and “To develop and change.” We found that preparation for transition, information of organisational and procedural changes when entering adult care, continuity and relationships with health professionals characterised by trust as well as involvement of adolescents and parents will ease the process of transition.

BackgroundRecently, the effectiveness of monitoring disease activity in rheumatoid arthritis (RA) through patient reported outcome (PRO) based tele-health follow-up was tested in a randomized controlled trail, TeRA (1). The TeRA study evaluated the effectiveness of the tele-health follow-up but did not study how patients grasp this new form of disease control. Many studies on tele-medicine focus on the over-all patient satisfaction with tele-medicine follow-up, but gives limited insight into what drives patient satisfaction (2).ObjectivesTo explore the experiences of a PRO based tele-health follow-up from the perspective of patients with RA with a special attention on experiences of taking a more active role and assuming more responsibility in the disease control.MethodsThe qualitative research strategy was Interpretive Description (3). From October 2015 to January 2016 we conducted individual semi-structured interviews with 15 patients with RA who had taken part of the tele-health follow-up. The selection of participants was purposive and participants with different sex, age, disease duration and severity were included. Age ranged from 28 – 77 years and disease duration from 4 – 41 years. The analysis of the interview transcripts was inductive with a constant comparative approach. First, we identified the main themes that could describe the participants' experiences. Subsequently, we constructed patient types that could explain different perspectives on the tele-health follow-up.ResultsFive themes covered the participants' experiences with PRO based tele-health follow-up: “A flexible solution”, “Responsibility”, “Knowledge of RA”, “Communication and involvement” and “Continuity”. Two different types of personalities: “the keen patient” and “the reluctant patient”, represented opposite perspectives and preferences regarding the core value of and approach to the tele-health follow-up compared to usual out-patient care.ConclusionsIn general, the participants had positive perceptions towards the PRO based tele-health follow-up and saw this as a flexible, time and resource saving solution. Disadvantages were mainly related to the missing face-to-face contact with health professionals. The two types of personalities, 'the keen patient' and 'the reluctant patient', contribute to the understanding of patients' different needs, wishes and abilities to take part in tele-health follow-up. Thus, our findings call for more insight of how tele-health follow-up could be integrated in routine clinical practice with a special attention on how to support “the reluctant” patient types.References De Thurah A, Stengaard-Pedersen K, Maribo T et al. A Tele-health Treatment Strategy for Tight Control of Disease Activity in Rheumatoid Arthritis: Results of the Non-inferiority Randomised Controlled Trail (the TeRA study). ClinicalTrials.gov Id: NCT02155894. Submitted 22.01.17. EULAR abstract number: EULAR17–2995.LeRouge MC, Garfield JM, Hevner RA. Patient perspectives of telemedicine quality. Patient Preference and Adherence 2015; 9:25 – ...

Background Patient education is integral to the treatment and care of patients with rheumatoid arthritis. Change is taking place in the organisation of healthcare systems because of a demographic shift towards ageing populations, an increasing use of technology and advancements in digital technologies, allowing for new interventions. This study will aim to evaluate the effectiveness of a newly developed e-learning patient education programme based on self-management that targets patients with rheumatoid arthritis. Methods A pragmatic multi-centre randomised controlled trial is planned. We intend to recruit approximately 200 patients with a new diagnosis (< 3 months) of rheumatoid arthritis. Participants will be randomised 1:1 to web-based patient education delivered through an e-learning programme at home or standard face-to-face patient education provided at the hospital. The primary outcome is self-efficacy. Secondary outcomes are improved knowledge of rheumatoid arthritis, adherence to medication, health literacy level and quality of life. Outcomes will be measured at baseline and follow-up occurring 1, 3, 6 and 12 months after enrolment. Furthermore, data on healthcare utilisation and utilisation of the e-learning programme will be assessed at the 12-month follow-up. Statistical analysis, including differences between groups, will be evaluated using the chi-square and Kruskal–Wallis tests. Statistical analysis will follow the intention-to-treat principle, and analysis of variance will be used to evaluate the within- and between-groups differences testing the hypothesis of the ‘superiority’ of web-based patient education over standard face-to-face education provided at the hospital. Per protocol analysis will be used to assess the impact of missing data. Enrolment started in February 2021 and will end in June 2022. Discussion The study is expected to contribute to the evidence on the effectiveness of web-based patient education within rheumatic diseases. If the e-learning programme is effective, it will be incorporated into existing services to improve the self-management of patients with rheumatoid arthritis. Further, this mode of providing patient education may impact the organisation of health care for both rheumatic diseases and other chronic diseases by offering different modes of delivering patient education based on the needs and preferences of patients. Trial registration: ClinicalTrials.gov identifier NCT04669340. Registered on November 27, 2020. https://www.clinicaltrials.gov/ct2/show/NCT04669340?term=e-learning&cond=Rheumatoid+Arthritis&draw=2&rank=1. See Additional file 1 for detailed information on the dataset according to the World Health Organization Trial Registration Data Set.

ObjectiveTo identify socioeconomic, disease‐related, and personal factors associated with participation in remote follow‐up in patients with rheumatoid arthritis (RA).MethodsFollowing 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.ResultsAll 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]).ConclusionParticipation 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.

Background Telemedicine is frequently used in the treatment of patients with different chronic diseases. Telemedical solutions have proven effective, time-saving and associated with patient satisfaction (1). However, no studies have explored the effect of telemedical interventions in patients with rheumatoid arthritis (RA). Evidence is scarce on the patient perspective concerning needs for and expectations to telemedical solutions (2). Objectives To identify necessary components of and expectations to a telemedical intervention to monitor and control disease activity in patients with RA from the perspective of health professionals and patients. Methods Patients with RA and health professionals were interviewed in focus groups. The group of patients included three females and three males aged 24 – 73 years with disease duration from three months to 40 years. The group of health professionals included six females and one male. The group consisted of three doctors and four nurses with a minimum of three years experience in rheumatology. The focus group discussions were taped and transcribed verbatim. Data were analysed in accordance with Kvale & Brinkmann including coding, condensation and interpretation of meaning (3). Results The analysis of the interview with patients resulted in nine central themes: “Outpatient consultation versus consultation by telephone”, “Qualifications”, “Structure and individualisation”, “Preparation”, “Communication”, “Continuity”, “Responsibility of patient”, “Confidence versus uncertainty of IT technology”, “Time, socially and economically efficient”. The analysis of the interview with health professionals resulted in eight central themes: “Outpatient consultation versus consultation by telephone”, “Qualifications”, “Experience of rheumatology”, “Structure and continuity”, “Responsibility of patient”, “Matching of expectations”, “Physical environment and organising”, “Time-saving”. Conclusions According to this study patients and health professionals agreed on what was necessary in telemedical interventions. Newly diagnosed patients are not candidates for telemedical interventions. Health professionals must be experienced in rheumatology care. Telemedical interventions must be structured from time to time and both patients and health professionals must be prepared. This study showed that it is not important whether telephone consultations are conducted by a doctor or a nurse. Patients highlighted that health professionals must be aware of how to communicate by phone to ensure that problems are not missed. Moreover, not all patients are familiar with the use of technology. The health professionals emphasised that there must be a matching of expectations, so patients are well informed about what to expect. In addition, thephysical environment must support the use of telemedical interventions. References Pare G., Jaana M., Sicotte C. Systematic review of home telemonitorering for chronic disease. the evidence base. J Am Med Inform Assoc 2007 May-Jun; 14(3):269-277 van Eijk-H...