Assessing the reporting quality of physical activity programs in randomized controlled trials for the management of juvenile idiopathic arthritis using three standardized assessment tools.

BACKGROUND: The reporting quality of physical activity (PA) programs in randomized controlled trials (RCTs) for the management of juvenile idiopathic arthritis (JIA) remains unknown. This study aimed to assess and compare the reporting quality of PA programs in RCTs for the management of JIA using three difference standardized assessment tools, and to describe the elements that were similar and different between these tools. METHODS: A systematic search was conducted for moderate-to high-quality RCTs of PA programs in JIA, published up until January 2019. Two reviewers independently included 10 RCTs and scored the reporting quality of PA programs using the following tools: Consensus on Exercise Reporting Template (CERT) checklist, Consensus on Therapeutic Exercise Training (CONTENT) scale, and Template for Intervention Description and Replication (TIDieR) checklist. RESULTS: Results showed that reporting of PA programs in 10 moderate- to high-quality RCTs for JIA management remains incomplete. The average reporting quality (± standard deviation) for all RCTs combined was moderate for the three standardized assessment tools with 70.8 (±14.3)% for the TIDieR checklist, 53.2 (±20.2)% for the CERT checklist, and 70.0 (±18.9)% for the CONTENT scale. Despite some overlap, the three standardized assessment tools (TIDieR, CERT, CONTENT) included different elements resulting in different scores. All tools assess elements linked to PA programs (provider, location, timing, personalization and adherence), but the CERT checklist includes other essential elements (e.g., additional resources, motivational strategies, adverse events). CONCLUSIONS: The lack of complete reporting of PA programs in RCTs for the management of JIA and the variation in scores and assessed elements among standardized assessment tools show the need to improve reporting. Using the most comprehensive standardized tool (i.e., the CERT) and providing accessible supplemental information on PA programs may improve the reporting quality of PA programs in RCTs and help reproduce PA programs in research and clinical practice.

[MEDICAL AND SOCIAL INSPECTION AS A PART OF THE REHABILITATION OF CHILDREN WITH JUVENILE RHEUMATOID ARTHRITIS].

Provided evaluation of the medical and social inspection of the dcotrors-consultative commission of Vinnytsya regional childrens hospital in children with juvenile rheumatoid arthritis (JRA). Patients with JRA that got position of the child-invalid are given individual program of the rehabilitation that includes medical, professional, sport and physical, social adaptation that gives ability control recommendations for both--physicians and parents.

The humanistic and economic burden of juvenile idiopathic arthritis in the era of biologic medication.

Juvenile idiopathic arthritis (JIA) is a poorly understood, heterogeneous, incurable, inflammatory syndrome. Long-term outcomes are uncertain, and this painful condition can result in lifelong disability. JIA is associated with considerable financial and humanistic burden for those affected and the healthcare system. Early diagnosis and effective treatment are indicated to optimise outcomes. Modern treatment aims to achieve remission and preserve joint function by using disease-modifying antirheumatic drugs (DMARDs) early. DMARDs can be classified as conventional/traditional or biologic. Biologic medications may be more effective but cost approximately ten times more than traditional DMARDs. Decision-makers in healthcare are increasingly comparing the cost and consequences of alternative treatment strategies to guide resource allocation decisions. There have been few economic evaluations to date to guide medicines optimisation in JIA. This systematic review highlights the lack of existing evidence relating to the humanistic and economic burden of JIA in the era of biologic medication.

Functional status in severe juvenile idiopathic arthritis in the biologic treatment era: an assessment in a French paediatric rheumatology referral centre.

OBJECTIVES: To investigate the functional status of difficult-to-treat JIA patients, including patients receiving biotherapies, and to correlate functional status to disease activity. METHODS: All JIA patients consecutively evaluated in a paediatric rheumatology referral centre (November 2008 to March 2009) were enrolled in an observational cross-sectional study. The Childhood HAQ (CHAQ), physician's assessment of overall disease activity, parent's assessment of well-being and pain, and active and limited joint numbers were measured. RESULTS: We enrolled 95 patients [27% systemic, 29% polyarticular, 22% enthesitis-related arthritis (ERA) and 23% oligoarticular JIA]. Median disease duration was 3.5 years. Treatment included NSAIDs (56%), MTX (23%), CSs (21%) and biologics (45%). Of all patients, 31 and 56%, respectively, had inactive and minimally active disease. The median CHAQ score was 0.375 (range 0-3). Most patients had no or mild functional disability (61%), impaired well-being (63%) or pain (55%); 10% reported severely impaired function and well-being, 19% severe pain. ERA patients reported worse well-being and pain. CHAQ scores correlated with disease activity. Long-lasting disease and biologic treatment were associated with better well-being and pain scores. CONCLUSION: Despite the high proportion of severe JIA patients in this cohort, CHAQ values are within the lower range of recent reports, probably related to new therapeutic approaches. Impaired function and well-being remain a challenge for at least 10% of the patients. Impaired well-being and pain in ERA patients require further study. The strong correlation between functional status and well-being underlines the importance of improving function to optimize quality of life.

Does removal of aids/devices and help make a difference in the Childhood Health Assessment Questionnaire disability index?

OBJECTIVE: To assess whether the removal of aids/devices and/or help from another person in the Childhood Health Assessment Questionnaire (C-HAQ) leads to a significant change in the disability index (DI) score and responsiveness in juvenile idiopathic arthritis (JIA). METHODS: Changes in the C-HAQ DI score in a cross-sectional sample of 2663 children with JIA and in 530 active patients with JIA in a trial of methotrexate (MTX) were compared. RESULTS: Patients in the MTX trial had higher disease activity and disability than the cross-sectional sample. The frequency of aids/devices (range 1.2-10.2%) was similar between the two samples, while help (range 5.3-38.1%) was more frequently used in the MTX group. Correlation between disease severity variables and the two different C-HAQ DI scoring methods did not change substantially. There was a decrease in the C-HAQ DI score for both the cross-sectional (mean score from 0.64 with the original method to 0.54 without aids/devices and help, p<0.0001) and the MTX sample (mean score from 1.23 to 1.07, p<0.0001). A linear regression analysis of the original C-HAQ DI score versus the score without aids/devices and help demonstrated the substantial overlap of the different scoring methods. Responsiveness in the responders to MTX treatment did not change with the different C-HAQ DI scoring methods (range 0.86-0.82). CONCLUSION: The removal of aids/devices and help from the C-HAQ does not alter the interpretation of disability at a group level. The simplified C-HAQ is a more feasible and valid alternative for the evaluation of disability in patients with JIA.

The differential effect of child age on the illness intrusiveness--parent distress relationship in juvenile rheumatic disease.

OBJECTIVE: Examine age-related patterns of association between parent-reported illness intrusiveness and parent distress in parents of youth with juvenile rheumatic diseases (JRDs). STUDY DESIGN: Cross-sectional multiple regression analysis tested child age as a moderator in the illness intrusiveness-distress relationship. PARTICIPANTS: Fifty-two parents of children ages 9-17 diagnosed with JRD. MAIN OUTCOME MEASURES: The Illness Intrusiveness Scale--Parent Version and the Brief Symptom Inventory. RESULTS: Parent-reported illness intrusiveness demonstrated a significant main effect on distress for all parents in the sample. This was qualified by an Illness Intrusiveness x Child Age interaction. Illness intrusiveness was found to be significantly related to distress among parents of older youth, but was only marginally related to distress for parents of younger children. CONCLUSIONS: Results are consistent with family life cycle development models of adjustment to childhood chronic illness. The clinical implications of the findings are also discussed.

A difference in perception of quality of life in chronically ill children was found between parents and pediatricians.

BACKGROUND AND OBJECTIVES: Quality of life measurements can help to estimate the well-being of chronically ill patients, and disclose discrepancies in perception between physicians and patients that might otherwise interfere with the effectiveness of treatment. The objective was to investigate the differences in perception of quality of life between parents of chronically ill children and pediatricians. METHODS: A cross-sectional study was conducted in four tertiary pediatric care centers in The Netherlands. The Health Utilities Index mark 3 (HUI3) was used by 37 pediatricians and 279 parents of patients (children aged 1 to 17 years) with cystic fibrosis admitted either in daycare or for a pneumonia, or patients with newly diagnosed acute lymphoblastic leukemia, juvenile idiopathic arthritis, or asthma. RESULTS: Differences in perception of quality of life between parents and pediatricians appeared to be dependent of the disease. In patients with acute lymphoblastic leukemia (OR 7.4; [95% CI 2.88-18.97], juvenile idiopathic arthritis (4.7; [95% CI 2.00-11.22]), and asthma (2.3; [95% CI 1.13-4.69]) a difference in perception was more likely to occur than in patients with cystic fibrosis admitted in daycare. CONCLUSION: At the onset of a chronic disease, the parents of pediatric patients may be misunderstood by health care professionals, especially in subjective attributes. Assessment of quality of life may contribute to better understanding between pediatricians and parents, and thus may even enhance compliance and treatment effects.

The use of multidisciplinary assessment and scientific measurement in advanced juvenile idiopathic arthritis can categorise gait deviations to guide treatment.

BACKGROUND: It is difficult to identify the range of gait deviations associated with juvenile idiopathic arthritis (JIA) using simple clinical observations. AIMS: To use objective gait analysis to accurately describe biomechanical gait abnormalities in JIA and to search for common patterns, which may subsequently serve as a basis for therapeutic intervention. METHODS: Children with persistent polyarticular arthritis and symmetrical joint involvement were referred to the Gait Analysis Laboratory and independently assessed by a multidisciplinary team. Gait analysis was performed using an in-house Visual Vector System and the Novel PEDAR in-shoe plantar pressure measurement system. Clinical groupings were based on the extent of joint restriction: minimal (group A), and moderate-severe (with supinatory foot deformity (group B), or with pronatory foot deformity (group C)). Gait analysis enabled classification of each subject into one of four gait patterns: either near normal (pattern I) or one of three adaptive patterns defined by the predominant abnormality--lower limb pain (pattern II), lower limb deformity (pattern III), or a combination of pain and deformity of the lower limb (pattern IV). RESULTS: Of the 15 subjects assessed as part of this study, seven were placed into clinical group A, six into group B, and two into group C. All the subjects with gait patterns I and II were found in clinical group A. Both subjects from clinical group C exhibited gait pattern III. All subjects from clinical group B and the remainder from group A exhibited a mixture of gait patterns III and IV. CONCLUSION: Despite the initial clinical observations it was not always possible to predict the resultant gait pattern. Scientific gait analysis allowed a clear distinction to be made between primary and secondary gait deviations, and accurate targeting of physiotherapy and orthotic interventions to suit each individual. Prospective quantitative analysis in a larger sample is under way to support the clinical effectiveness of these findings.

Validation of the Italian version of the Stanford Childhood Health Assessment Questionnaire for measuring functional status in children with chronic arthritis.

The Stanford Health Assessment Questionnaire developed by Singh et al. to measure functional status in children with chronic arthritis (CHAQ) was translated into Italian (I-CHAQ), with minor modifications to obtain cross-cultural equivalence. This version was evaluated in a series of 96 patients with juvenile rheumatoid arthritis (JRA), both males and females ranging in age from 3 to 19 years (mean age 9.9 years). All three onset subtypes and all four classes of disability were represented in the sample. The questionnaire was filled in by the parents if the children were less than 8 years of age (23 cases), and by the children themselves in all other cases; a health professional was always present to provide assistance. As expected, JRA patients with a systemic or polyarticular disease onset had higher scores than those with a pauciarticular onset, and there were statistically significant differences in disability index values between patients from different Steinbrocker functional classes. The instrument showed good reproducibility in a test-retest over a two-week period, a high correlation between the child and parent scores, excellent internal reliability, and good convergent and discriminant validity.

Physical conditioning in children with arthritis: Assessment and guidelines for exercise prescription.

OBJECTIVE: To review the literature in the area of physical fitness and conditioning programs for individuals with chronic illnesses, and increase the awareness of the need to include fitness testing and conditioning programs in the therapeutic management of children and adolescents with chronic arthritis. METHODS: This article provides a review of original research reports, information from principal texts, and review articles related to physical fitness testing and training in children. RESULTS: Several factors limit the exercise capacity of children with chronic arthritis, and studies report that these children have lower aerobic endurance and muscle performance than their peers. Preliminary studies suggest that fitness testing is safe for most children with arthritis, and physical conditioning programs, which appear to benefit adults with arthritis and children with other chronic illnesses, may also benefit children with arthritis. Easily administered, inexpensive field tests of fitness are available. Guidelines for prescribing physical conditioning programs are provided. The risks and benefits of increased exercise are discussed. CONCLUSIONS: Assessment of exercise capacity and muscle function and individualized prescription of physical conditioning programs are indicated for children with chronic arthritis, soon after diagnosis.

Parental risk and resistance factors among children with juvenile rheumatic disease: a four-year predictive study.

Examined the extent to which baseline functioning and parental risk and resistance factors predicted disease-related (functional disability and pain) and psychosocial functioning (social competence and behavior problems) 4 years later among 172 children with juvenile rheumatic disease. The study also examined the extent to which fathers' risk and resistance factors explained patients' adaptation, above and beyond maternal factors. Poorer baseline functioning was a strong risk factor that predicted poorer functioning 4 years later. In addition, parental risk and resistance factors at baseline predicted patients' adjustment after patients' age and baseline functioning were controlled. Mothers' and fathers' personal strain and depressed mood, and fathers' drinking problems, were associated with poorer patient adjustment; mothers' and fathers' social functioning appeared to aid patients' adjustment. Fathers' risk and resistance factors contributed independently from those of mother, to predict patients' outcome.

Health status (arthritis impact) in children with chronic rheumatic diseases. Current measurement issues and an approach to instrument design.

Arthritis outcome measures in adults have evolved from biologic "disease activity," to observations of motor/movement based "functional status," to assessment of "health status." This monograph suggests a framework for developing a pediatric arthritis health status (impact) instrument in which measurable global outcome dimensions include psychological, social, ADL, pain, school, family, behavioral, and developmental variables. Physical and laboratory parameters of inflammation/disease activity are not part of either functional status or arthritis impact, but rather perhaps the most important predictor variable of outcome. Juvenile rheumatoid arthritis (JRA) is a prototypic chronic disease for development of a health status instrument for children. Prior obstacles have been (a) that systemic, polyarticular, and pauciarticular JRA appear to have very different amounts of impact on health status; and (b) although juvenile arthritis has proven a useful term for medical and public education, its value as a study entry criterion for functional status instrument development is limited. Any new pediatric arthritis impact instrument must fulfill five criteria: enable quantification; demonstrate reliability, validity, and precision; and specify data collection procedures. Important design issues include (a) developing a self-report format for children, (b) ensuring generalizability across age groups, and (c) the parent as proxy in most patient-related dialogue and interventions. Instrument elements could come from 8-10 adult and pediatric health/functional status instruments already in use. By 10 years of age, children can provide much independent information. Whether global assessments by patient, parent, and physician should be included, or be a separate "gold standard," is not yet clear. The creation of better health status measures is an important and formidable challenge for pediatric rheumatology.