RESUMEN
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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Artritis Reumatoide , Automanejo , Humanos , Educación del Paciente como Asunto , Investigación Cualitativa , Aprendizaje , Artritis Reumatoide/terapiaRESUMEN
BACKGROUND: Remote 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). OBJECTIVE: To develop EULAR points to consider (PtC) for the development, prioritisation and implementation of telehealth for people with RMD. METHODS: A 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. RESULTS: Four 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. CONCLUSION: The 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.
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COVID-19 , Enfermedades Musculoesqueléticas , Telemedicina , Accesibilidad a los Servicios de Salud , Humanos , Enfermedades Musculoesqueléticas/terapia , PandemiasRESUMEN
Objective: To develop an e-learning education program targeting patients with rheumatoid arthritis. Methods: The development process involved content specification and creative design. It was theoretically framed within theories of multimedia learning and entertainment-education and empirically based on evidence of patient education in rheumatoid arthritis and focus group discussions with stakeholders. We conducted a feasibility test among ten patients to assess the acceptability and usability of the program, and to identify areas to be adjusted. Results: The following themes for educational needs were found in focus group discussions: "Knowledge of rheumatoid arthritis," he disease course and prognosis," "Medical treatment," "A new life situation" and "Daily life with rheumatoid arthritis." Based on this, an e-learning program covering the disease course, examinations, treatment, and daily life, was created. It combines animations, videos, podcasts, text, speech, and tests. Test persons found the program feasible-that is, clear in content and easy to understand with a suitable pace and coherence between graphics, speech, and text. Conclusion: This e-learning program is based on solid theoretical knowledge that meets users' needs and is easy to use. Innovation: This study contributes to the innovation of health care by the development of a new digital tool for patient education.