OBJECTIVES: To develop and validate the cut-offs in the Juvenile DermatoMyositis Activity Index (JDMAI) to distinguish the states of inactive disease (ID), low disease activity (LDA), moderate disease activity (MDA) and high disease activity (HDA) in children with juvenile dermatomyositis (JDM). METHODS: For cut-off definition, data from 139 patients included in a randomised clinical trial were used. Among the six versions of the JDMAI, JDMA1 (score range 0-40) and JDMAI2 (score range 0-39) were selected. Optimal cut-offs were determined against external criteria by calculating different percentiles of score distribution and through receiver operating characteristic curve analysis. External criteria included the modified Pediatric Rheumatology International Trials Organization (PRINTO) criteria for clinically ID in JDM (for ID) and PRINTO levels of improvement in the clinical trial (for LDA and HDA). MDA cut-offs were set at the score interval between LDA and HDA cut-offs. Cut-off validation was conducted by assessing construct and discriminative ability in two cohorts including a total of 488 JDM patients. RESULTS: The calculated JDMAI1 cut-offs were ≤2.4 for ID, ≤6.6 for LDA, 6.7-11 for MDA and >11 for HDA. The calculated JDMAI2 cut-offs were ≤5.2 for ID, ≤8.5 for LDA, 8.6-11.3 for MDA and >11.3 for HDA. The cut-offs discriminated strongly among disease activity states defined subjectively by caring physicians and parents, parents' satisfaction or non-satisfaction with illness outcome, levels of pain, fatigue, physical functional impairment and physical well-being. CONCLUSIONS: Both JDMAI1 and JDMAI2 cut-offs revealed good metrologic properties in validation analyses and are, therefore, suited for application in clinical practice and research.
- MeSH
- dermatomyozitida * diagnóza MeSH
- dítě MeSH
- lékaři * MeSH
- lidé MeSH
- randomizované kontrolované studie jako téma MeSH
- revmatologie * MeSH
- ROC křivka MeSH
- stupeň závažnosti nemoci MeSH
- Check Tag
- dítě MeSH
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
In this article, we review published literature on "telerheumatology", a term describing the use of telemedicine in rheumatology. This field has received considerable recent attention through the development of efficient digital technologies, resulting in a good level of satisfaction among patients and health care professionals. In 2020, the social distancing constraints during the COVID-19 pandemic accelerated more widespread adoption worldwide. Telerheumatology is particularly suited for patients with rheumatoid arthritis who have achieved a sustained therapeutic target of remission or low disease activity. To facilitate remote consultations and meet expectations of rheumatologists and patients, international and national guidelines have recently been proposed and existing tools, such as Patient-Reported Outcomes questionnaires, have had to be digitally adapted. In addition, telerheumatology toolkits are proposed by the Arab League of Associations for Rheumatology (ArLAR), the Association of American Medical College (AAMC), and the American College of Rheumatology (ACR) for all learners, from medical students to practicing clinicians, encouraging the acquisition of telehealth skills and facilitating their integration into their routine clinical practice. The main benefits reported for this mode of health care are greater access to specialty care, flexibility, reduced rates of missed appointments, as well as improved patient engagement and autonomy. Limitations include the absence of physical examination. However, to implement telerheumatology effectively and widely in daily clinical practice, some barriers still need to be addressed. These include training of health care professionals, technological restrictions and reimbursement mechanisms. Despite the advantages of telerheumatology, it is not intended to replace face-to-face visits, but rather as a way to enhance access to care, service delivery and health care support for patients.
- MeSH
- konzultace na dálku * metody MeSH
- lidé MeSH
- pandemie MeSH
- poskytování zdravotní péče MeSH
- revmatologie * metody MeSH
- telemedicína * metody MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- přehledy MeSH
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.
- MeSH
- lidé MeSH
- průzkumy a dotazníky MeSH
- revmatologie * výchova MeSH
- stupeň vzdělání MeSH
- zdravotnický personál výchova MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- Geografické názvy
- Evropa MeSH
- MeSH
- herpes zoster prevence a kontrola MeSH
- lékaři ekonomika MeSH
- lidé MeSH
- mzdy a přídavky MeSH
- poskytování zdravotní péče * MeSH
- revmatologie MeSH
- revmatologové MeSH
- studium lékařství specializační postgraduální MeSH
- vakcinace MeSH
- zdravotní pojištění organizace a řízení MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- novinové články MeSH
- Geografické názvy
- Německo MeSH
- MeSH
- dějiny 20. století MeSH
- politika MeSH
- revmatologie MeSH
- vnitřní lékařství MeSH
- vojenské lékařství MeSH
- Check Tag
- dějiny 20. století MeSH
- Publikační typ
- biografie MeSH
- historické články MeSH
- O autorovi
- Kriegel, František, 1908-1979 Autorita
- MeSH
- lidé MeSH
- revmatologie * MeSH
- společnosti lékařské MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- úvodníky MeSH
- MeSH
- revmatologie * MeSH
- Publikační typ
- biografie MeSH
- O autorovi
- Pavelka, Karel, 1922-1994 Autorita
- MeSH
- lidé MeSH
- revmatologie * MeSH
- společnosti lékařské * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- úvodníky MeSH
