Search

Background This study aims to describe current practice in identifying and measuring health care resource use and unit costs in economic evaluations or costing studies of juvenile idiopathic arthritis (JIA). Methods A scoping review was conducted (in July 2018) in PubMed and Embase to identify economic evaluations, costing studies, or resource utilization studies focusing on patients with JIA. Only English language peer-reviewed articles reporting primary research were included. Data from all included full-text articles were extracted and analysed to identify the reported health care resource use items. In addition, the data sources used to obtain these resource use and unit costs were identified for all included articles. Results Of 1176 unique citations identified by the search, 20 full-text articles were included. These involved 4 full economic evaluations, 5 cost-outcome descriptions, 8 cost descriptions, and 3 articles reporting only resource use. The most commonly reported health care resource use items involved medication (80%), outpatient and inpatient hospital visits (80%), laboratory tests (70%), medical professional visits (70%) and other medical visits (65%). Productivity losses of caregivers were much more often incorporated than (future) productivity losses of patients (i.e. 55% vs. 15%). Family borne costs were not commonly captured (ranging from 15% for school costs to 50% for transportation costs). Resource use was mostly obtained from family self-reported questionnaires. Estimates of unit costs were mostly based on reimbursement claims, administrative data, or literature. Conclusions Despite some consistency in commonly included health care resource use items, variability remains in including productivity losses, missed school days and family borne costs. As these items likely substantially influence the full cost impact of JIA, the heterogeneity found between the items reported in the included studies limits the comparability of the results. Therefore, standardization of resource use items and unit costs to be collected is required. This standardization will provide guidance to future research and thereby improve the quality and comparability of economic evaluations or costing studies in JIA and potentially other childhood diseases. This would allow better understanding of the burden of JIA, and to estimate how it varies across health care systems. Electronic supplementary material The online version of this article (10.1186/s12969-019-0321-x) contains supplementary material, which is available to authorized users.

To develop standards and recommendations for transitional care for young people (YP) with juvenile-onset rheumatic and musculoskeletal diseases (jRMD). The consensus process involved the following: (1) establishing an international expert panel to include patients and representatives from multidisciplinary teams in adult and paediatric rheumatology; (2) a systematic review of published models of transitional care in jRMDs, potential standards and recommendations, strategies for implementation and tools to evaluate services and outcomes; (3) setting the framework, developing the process map and generating a first draft of standards and recommendations; (4) further iteration of recommendations; (5) establishing consensus recommendations with Delphi methodology and (6) establishing standards and quality indicators. The final consensus derived 12 specific recommendations for YP with jRMD focused on transitional care. These included: high-quality, multidisciplinary care starting in early adolescence; the integral role of a transition coordinator; transition policies and protocols; efficient communications; transfer documentation; an open electronic-based platform to access resources; appropriate training for paediatric and adult healthcare teams; secure funding to continue treatments and services into adult rheumatology and the need for increased evidence to inform best practice. These consensus-based recommendations inform strategies to reach optimal outcomes in transitional care for YP with jRMD based on available evidence and expert opinion. They need to be implemented in the context of individual countries, healthcare systems and regulatory frameworks.

Background/Purpose: Internet-use is increasing since it is an efficient way to find information. Information obtained via Health Related Internet (HRI) sites, or online peer support groups might increase knowledge and self-management in adolescents and young adults with Juvenile Idiopathic Arthritis (JIA). This study evaluates the frequency of use and perceived relevance of HRI use and its association with demographic, disease-related and psycho-social variables. Methods: In a cross-sectional study, all consecutive JIA patients from the outpatient clinic (age 10 – 27 years) who gave informed consent were asked to complete a self-reported questionnaire. Frequency of using HRI-sites (regarding information about JIA, medication-use and aspects of JIA related to social life) as well as having online contact with fellow patients were evaluated. Perceived relevance of HRI use and contact with fellow patients were also investigated. Demographic variables, disease activity, medication and emotional behavior and coping were assessed as possible predictors. Results: 142 patients were included and 98% had access to internet. 71% had used internet to search general information on JIA, but specific topics such as medication, were less searched for (6–35%). Most favorite sites to look for information were www.reumafonds.nl (Dutch Arthritis Foundation; 20%); www.google.com (16%); www.jong-en-reuma.nl (UMCU hospital site for rheumatic diseases; 14%) and www.printo.it (Pediatric Rheumatology European Society information site; 3%). One in four adolescents had ever visited a forum or had online contact with peers. Most favorite discussion for a were www.reumaforum.nl (peer support for general rheumatic diseases; 14%); www.jeugdreuma.com (parents of children support forum; 5%) and www.Youth-R-Well.com (peer support information and forum for 16–30 year old patients; 5%). Whereas most had used the internet to find information about JIA, the perceived relevance of HRI-sites and of opportunities for online peer contact was rated low (medians respectively 2,0 and 1,0 on a scale 0–10). Female gender was positively associated with HRI use (P0.01), other demographic and disease related factors were not associated with HRI use. Coping styles “confrontation” and “reassuring thoughts” were associated with increased HRI use, but only in males. Internalizing and externalizing problem behavior were not significantly associated. Conclusion: Frequency of Health Related Internet use in young people with JIA was less than expected and considered of low relevance. Besides female gender no demographic and disease related factors were associated. HRI in present form cannot replace regular information as an additional source to increase knowledge.

Transition of Care in Rheumatology: Managing the Rheumatic Patient from Childhood to Adulthood