Janalee Taylor

Social, emotional, and behavioral functioning of children with juvenile rheumatoid arthritis

OBJECTIVE To investigate the hypothesis that children with juvenile rheumatoid arthritis (JRA) would have more social and emotional problems than case-control classmates. METHODS Using a case-control design, children with JRA (n = 74), ages 8-14, were compared with case-control classmates (n = 74). Peer relationships, emotional well-being, and behavior, based on peer-, teacher-, parent-, and self-report scores on common measures, were compared using analysis of variance. RESULTS Relative to case-control classmates, children with JRA were similar on all measures of social functioning and behavior. Mothers reported more internalizing symptoms in the child with JRA, but child self reports and father reports showed no differences. Scores on all standardized measures were in the normal range for both the JRA and the case-control groups. CONCLUSION 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.

Usefulness of Cellular Text Messaging for Improving Adherence Among Adolescents and Young Adults with Systemic Lupus Erythematosus

Objective. In a cohort of 70 patients with childhood-onset systemic lupus erythematosus (cSLE): to determine the baseline adherence to medications and visits; to investigate the effects of cellular text messaging reminders (CTMR) on adherence to clinic visits; and to study the influence of CTMR on adherence to use of hydroxychloroquine (HCQ). Methods. CTMR were sent to 70 patients prior to clinic visits for 14 months. A subgroup of patients were evaluated for medication adherence to HCQ: 19 patients receiving CTMR prior to each scheduled HCQ dose were compared to 22 patients randomized to standard of care education about HCQ. Visit adherence was measured using administrative databases. Pharmacy refill information, self-report of adherence, and HCQ blood levels were utilized to monitor medication adherence to HCQ. Sufficient adherence to visits or HCQ was defined as estimates > 80%. Disease activity was primarily monitored with the Systemic Lupus Erythematosus Disease Activity Index. Results. At baseline, 32% of patients were sufficiently adherent to HCQ, and 81% to clinic visits. Visit adherence improved significantly by > 80% among those who were nonadherent to clinic visits at the baseline CTMR (p = 0.01). CTMR did not influence adherence to HCQ over time. Conclusion. 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.

Measuring process of arthritis care: A proposed set of quality measures for the process of care in juvenile idiopathic arthritis

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 QMs for the assessment of the process of care in juvenile idiopathic arthritis (JIA).

Educational and occupational outcomes among young adults with juvenile idiopathic arthritis.

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 persons 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.

Monitoring Methotrexate Toxicity in Juvenile Idiopathic Arthritis

Objective. To determine the frequency of laboratory abnormalities with methotrexate (MTX) use in patients with juvenile idiopathic arthritis (JIA); to identify potential risk factors for MTX toxicity requiring medical interventions; and to compare the frequency of liver function abnormalities in patients treated with MTX to those not treated with MTX. Methods. Results of MTX surveillance laboratory testing (SLT) available in clinical databases were reviewed for 588 children with JIA. Information on demographics, JIA features, and factors previously associated with increased frequency of SLT abnormalities was obtained. Results. Results of SLT performed in at least 4-month intervals were available for 138 JIA patients whose JIA was not treated with MTX, and for 198 JIA patients treated with MTX plus folic acid. On SLT of the MTX-treated patients, there were 44 of 2650 (1.7%) AST tests and 90 of 2647 (3.4%) ALT tests that exceeded 2 times the upper limit of normal (> 2 ULN) in 30 children (15%). AST or ALT tests at > 2 ULN occurred more often with systemic JIA (p = 0.04), macrophage activation syndrome, during infections, in systemic antibiotic use, and after intensifying JIA drug regimens. AST or ALT results at > 2 ULN were as frequent among MTX-treated children as those not treated with MTX. Renal and hematological abnormalities with MTX were uncommon. Conclusion. Liver enzyme abnormalities > 2 ULN are rare in JIA, irrespective of MTX exposure. These data suggest that the adult standard of SLT every 4–8 weeks may not be necessary in children treated with MTX, especially if certain risk factors are absent.

A distinct HLA-DRw8 haplotype characterizes patients with juvenile rheumatoid arthritis.

We studied the first domain of the HLA-DRB1, HLA-DQA1, and HLA-DQB1 loci of 67 HLA-DRw8-positive Caucasians including 43 with early-onset pauciarticular juvenile rheumatoid arthritis (EOPA-JRA, alternatively known as early-onset pauciarticular juvenile chronic arthritis). Serology, restriction fragment length polymorphism (RFLP), and polymerase chain reaction (PCR) oligotyping revealed that 62, including all the EOPA-JRA patients, carried the HLA-DRB1*0801, DQA1*0401, DQB1*0402 genotype. Approximately onefifth of the controls carried atypical HLA-DRB1, HLA-DQA1, and/or HLA-DQB1 loci on their HLA-DRw8 haplotype confirmed by family studies. DNA sequences of HLA-DRB1, DQA1, and DQB1 alleles in patients and controls were identical to those previously reported. Disease association studies in 113 EOPA-JRA patients and 207 controls unselected for HLA-DRw8 revealed that the HLA-DRB1*0801, DQA1*0401, DQB1*0402 genotype was associated with a higher relative risk (RR) for disease (RR = 12.8, χ2 = 48.8, P < 10−4) than was the serologically defined presence of HLA-DRw8 (RR = 8, χ2 = 39, P < 10−4). Further analysis suggested that the DQ genes on HLA-DRw8 haplotypes are as likely as the DR genes to contribute to the pathogenesis of EOPA-JRA. This study increases to five the number of HLA-DR/DQ haplotypes identified in HLA-DRw8 Caucasians.

Quality improvement in pediatric rheumatology: what do we need to do?

Purpose of reviewQuality improvement is a mandate for all individuals and institutions in medicine. Quality improvement has spread to the specialty certifying boards, resident education accreditation, licensure boards, and hospital medical staff offices. This review summarizes the thrust of quality improvement, provides justification for the conduct of quality improvement work, and reviews the progress in development of quality measures in rheumatology to date. Recent findingsThe American College of Rheumatology, quality of care, and quality measure committees have developed quality indicators for rheumatoid arthritis, gout, osteoporosis, and drug safety. Pediatric rheumatology is charged with developing quality measures for juvenile idiopathic arthritis; thus, there is a commitment to improve the processes and patient outcomes. Quality improvement science has progressed over the last decade and employs methodology that utilizes small number and rapid improvement cycles. Examples of this quality improvement methodology are elaborated in this review. SummaryThe review summarizes the history and current mandates for quality improvement in the medical community, progress made in the development of quality measures for adult rheumatologic conditions, and preliminary quality measures for juvenile idiopathic arthritis, and cites examples of quality improvement in progress in the pediatric rheumatology.

A Survey of Conventional and Complementary Therapies Used by Youth with Juvenile-Onset Fibromyalgia

Little is known regarding treatment choices of youth diagnosed with juvenile-onset fibromyalgia (JFM) as they move into young adulthood. Additionally, there is little empirical evidence to guide youth with FM into appropriate treatment options, leading to a variety of therapies used to manage FM symptoms. The purpose of this descriptive study was to examine all therapies used by individuals with JFM as they entered young adulthood and the perceived effectiveness of these treatments. As part of a larger follow-up study, participants completed a web-based survey of all current and past treatments received for FM symptoms 2 years after their initial presentation and diagnosis at a pediatric rheumatology clinic. One hundred ten out of 118 eligible patients participated in the follow-up assessment as young adults (mean age 18.97 years; 93.6% female). A majority of participants reported use of conventional medications (e.g., antidepressants, anticonvulsants) and nondrug therapies (e.g., psychotherapy). Currently and within the past 2 years, antidepressant medications were the most commonly used to manage FM. Complementary treatments were used less often, with massage being the most popular choice. Although currently used treatments were reported as being effective, past treatments, especially medications, were viewed as being more variably effective. This is a potential reason why young adults with JFM might try more complementary and alternative approaches to managing their symptoms. More controlled studies are needed to investigate the effectiveness of these complementary methods to assist treatment providers in giving evidence-based treatment recommendations.

Social Outcomes Among Emerging Adults With Juvenile Idiopathic Arthritis

This longitudinal study examined social outcomes among young adults with juvenile idiopathic arthritis (JIA) and matched peers during the transition from adolescence to emerging adulthood. Participants included 45 participants with JIA (M = 12.64 years post diagnosis), 46 peers, and their parents. Young adults in both groups were similar on a variety of outcomes, including social self-concept, social competence, family relationships, friendships, and romantic relationships. In general, disease factors were not associated with adjustment. Interventions to assist social functioning may not be necessary for all children with JIA, but additional research is needed to identify potential subgroups at risk for difficulties.

Lack of Concordance in Inter‐Rater Scoring of the Provider's Global Assessment of Children with Juvenile Idiopathic Arthritis with Low Disease Activity

To measure agreement among raters when scoring the physician/provider global assessment (PGA) of disease activity in patients with juvenile idiopathic arthritis (JIA) with no apparent disease activity, and to identify clinical and laboratory parameters that most strongly influence provider scoring of the PGA.