Patients with cSLE were only modestly adherent to HCQ and clinic visits. CTMR may be effective for improving visit adherence among adolescents and young adults with cSLE, but it does not improve adherence to HCQ.

Children with JRA were remarkably similar to case-control children on measures of social functioning, emotional well-being, and behavior. These findings are not supportive of disability/stress models of chronic illness in childhood and suggest considerable psychological hardiness among children with JRA.

Objectives: To design, implement, and assess the impact of an office-based intervention designed to improve rheumatologists' identification of risk behaviors, especially alcohol use and sexual activity, among adolescents and young adults with chronic rheumatologic conditions.Design: Prospective intervention study.Setting: Midwestern academic pediatric rheumatology practice.Participants: Ten attending rheumatologists and fellows and 178 patients (mean age, 18.1 years; 67% female; 88% white; 69% with juvenile rheumatoid arthritis) seen in the practice during the baseline and intervention years. Main Outcome Measures:Change in the rate of screening for alcohol use and sexual activity from the baseline to the intervention year, and physician perceptions of the intervention.Results: Screening for alcohol use increased from 4.2% (9/208) at baseline to 31.6% (56/177) after the intervention (PϽ.001). Of those patients undergoing screening at follow-up, 20 (36%) of 56 patients reported any alcohol use and 11 (20%) reported current alcohol use. Of those reporting current use, 7 (64%) were counseled or referred. Methotrexate use increased the likelihood of alcohol screening (43% [33/76] vs 26% [23/87]; P = .02). Screening for sexual activity increased from 12.4% (27/ 218) to 36.2% (64/177) (PϽ.001) from baseline to followup. Of 52 females undergoing screening at follow-up, 31 (60%) were sexually active. Eleven (41%) of 27 sexually active females were not using contraception other than condoms (4 were not asked about contraception); 7 (82%) of these were referred for contraceptive counseling. Seven rheumatologists completed in-depth semistructured interviews after the intervention. All reported time as a main barrier to screening. Other barriers included logistical problems, discomfort with the subject area, ambivalence about whether risk behavior screening is the province of pediatric rheumatologists, and perceived lack of applicability to their patients. Conclusions:Despite knowledge and concern about the interaction of immunosuppressive therapy and risk behaviors, few rheumatologists adequately screen the behavior of their adolescent and young adult patients. Time constraints, organizational issues, and physician beliefs remain barriers to widespread screening.Arch Pediatr Adolesc Med. 2000;154:478-483

Objectives The ability to assess quality of care is a necessary component of continuous quality improvement. The assessment typically is accomplished by determination of compliance with a defined set of quality measures (QMs). The objective of this effort was to establish a set of QM for the assessment of the process of care in JIA. Methods A 12 member working group (WG) composed of representatives from the ACR, AAP, ABP, and ARHP was assembled to guide the project. Delphi questionnaires were sent to 237 health professionals involved in the care of children with juvenile idiopathic arthritis (JIA). A total of 471 items in 27 domains were identified. The WG met via four live e-meetings during which results from the Delphi’s were distilled to a reduced draft set. Each WG member selected a proposed QM to investigate and present evidence from the literature as to its attributes and appropriateness for inclusion into the set. Nominal group technique was used to come to consensus on a proposed set of QMs. Results The proposed set contains 12 QMs within four health care domains. Each QM consists of a statement of (i) the assessment to be completed, (ii) when the first assessment should be completed and a suggested frequency of assessment during follow-up, (iii) recommendations of appropriate tools or methods of assessment, and (iv) initial performance goals. Conclusions Implementation of the proposed QM set will improve the process of care, facilitate continuous QI, and eventuate in improved health outcomes of children with JIA.

Serum S100 levels did not predict maintenance of CID or disease flare, with S100A12 levels only moderately correlating inversely with time to disease flare. This article is protected by copyright. All rights reserved.

No abstract

Implementing a standardized tool assessing adherence barriers in the JIA population across multiple clinical settings is feasible. Systematic screening sheds light on the factors that make adherence difficult in JIA and identifies targets for future adherence interventions in clinical practice.

Objective. To examine educational and occupational outcomes among young adults with juvenile idiopathic arthritis (JIA) and peers during the transition from adolescence to emerging adulthood. Methods. Families were recruited when children with JIA were 8 -14 years old. At that time, each child with JIA was matched to a classmate of similar age, sex, and race for inclusion in a comparison group. For the current followup (12.64 years postdiagnosis), 45 participants with JIA, 46 peers, and their parents completed questionnaires soon after the young person's 18th birthday. Disease type and severity were rated by health care providers. Results. Young adults with JIA and peers were similar on a variety of factors, including family background, scholastic and occupational self-concept, and academic competence. The proportion of participants who graduated from high school, were working, and expressed plans to attend postsecondary education or seek employment was similar between groups. Disease type, initial severity, and time since diagnosis were generally not associated with indices of educational and occupational attainment. Conclusion. Despite the challenge of having a chronic illness, young adults with JIA were similar to peers on numerous educational and occupational outcomes during the transition from adolescence to emerging adulthood. Interventions to assist academic or occupational functioning may not be necessary for all children with JIA, but additional research is needed to identify subgroups at risk for long-term difficulties.