Related Experiment Video
Updated: Oct 11, 2026
The Participant-Reported Implementation Update and Score (PRIUS): A Novel Method for Capturing Implementation-Related Data Over Time
Published on: February 19, 2021
[Transition: between recommendations and real-world care : Results from the InfoTrans project]
Florian Milatz1,2,3, Susanne Schalm4, Kirsten Minden5,6,7
1Forschungsbereich Epidemiologie und Versorgungsforschung, Deutsches Rheuma-Forschungszentrum Berlin (DRFZ), ein Institut der Leibniz-Gemeinschaft, Charitéplatz 1, 10117, Berlin, Deutschland. florian.milatz@drfz.de.
Background:
The transition from pediatric to adult rheumatology care represents a particular challenge for young people with juvenile idiopathic arthritis (JIA).
Objectives:
To investigate the continuity of care, disease burden, transition competence and unmet needs among young adults with JIA.
Material And Methods:
Within the Innovation Fund project InfoTrans, a cross-sectional survey was conducted among- individuals insured with the Barmer health insurance aged 16-25 years with JIA and pseudonymously linked with health insurance claims data. For the present analysis, young adults aged 20 years and older with prior pediatric rheumatology care were included. Data collected comprised current healthcare utilization, patient-reported outcomes, transition competence (Transitions-KompAZ), and psychological well-being (WHO-5).
Results:
Among 269 surveyed young adults with JIA, 45% were receiving specialist rheumatology care. Participants receiving rheumatology care showed higher transition competence (22.7 vs. 19.0; p < 0.001), had more frequently attended a transition consultation (17% vs. 9%), and were more often aware of the website "mein-rheuma-wird-erwachsen.de" (33% vs. 20%; p = 0.013). Despite comparable disease burden, participants without specialist care received DMARD therapy less frequently (18% vs. 63%). Gaps in care were also observed among participants receiving rheumatology care: the average interval between the last pediatric rheumatology and first adult rheumatology visit was 9.9 months. Overall, 35% had not received a medical transfer summary report, more than 40% were dissatisfied with preparation for transfer, and approximately 1 in 5 participants reported relevant depressive symptoms.
Conclusion:
Relevant discrepancies remain between recommendations for structured transitional care and actual care delivery. Disease-related knowledge appears to be a central factor for continuous follow-up in rheumatology. The findings underline the importance of early patient education and better integration of support services.
Related Concept Videos
01:27Nursing Clinical Information System
A Nursing Clinical Information System (NCIS) is a specialized type of healthcare information system tailored to meet the unique needs of nursing practice. It incorporates the principles of nursing informatics to streamline information management and improve the quality of care delivery.
Critical attributes of NCIS include:
01:23Types of Biopharmaceutical Studies: Controlled and Non-Controlled Approaches
Non-controlled studies, commonly employed for initial exploration, lack a control group, rendering them susceptible to biases and external influences. In contrast, controlled...
01:30Current Trends in Nursing II
01:26Methods Of Healthcare Delivery System
Managed Care System:
The managed care system is designed to control the cost while maintaining the quality of care. The patient's care from admission to discharge is planned by the primary care provider or the case manager, also known as the gatekeeper. In a managed care system, the number of care providers is limited...
01:29Issues And Trends In Healthcare Delivery System
Cost Containment
Payment for healthcare services has historically promoted adoption of costly and often unnecessary or inefficient...
01:11Guidelines for Writing Outcome
Patient outcomes reflect the patient's response to the goal rather than what the nurse aims to achieve. Terminology should be observable and measurable to avoid the reader's interpretation. The desired outcome should be realistic and achievable in the designated care timeframe. Expected outcomes should align with adjunctive therapies. The outcome should enhance care evaluation by...