Otto Lelieveld

Aerobic and anaerobic exercise capacity in adolescents with juvenile idiopathic arthritis

OBJECTIVE To examine the aerobic and anaerobic exercise capacity in adolescents with juvenile idiopathic arthritis (JIA) compared with age- and sex-matched healthy individuals, and to assess associations between disease-related variables and aerobic and anaerobic exercise capacity. METHODS Of 25 patients enrolled in a JIA transition outpatient clinic, 22 patients with JIA were included in this study (mean +/- SD age 17.1 +/- 0.7 years, range 16-18 years). Aerobic capacity was examined using a Symptom Limited Bicycle Ergometry test. Anaerobic capacity was assessed with the Wingate Anaerobic Test. Functional ability was assessed with the Childhood Health Assessment Questionnaire. Pain and overall well-being were measured using a visual analog scale. Disease duration and disease activity were also assessed. RESULTS Absolute and relative maximal oxygen consumption in the JIA group were significantly impaired (85% and 83% for boys, respectively; 81% and 78% for girls, respectively) compared with healthy controls. Mean power was also significantly impaired (88% for boys and 74% for girls), whereas peak power was significantly impaired for girls and just failed significance for boys (67% for girls and 92% for boys). A post hoc analysis correcting for underweight and overweight demonstrated that body composition did not influence the results substantially. CONCLUSION This study demonstrated that adolescents with JIA have an impaired aerobic and anaerobic exercise capacity compared with healthy age- and sex-matched peers. The likely cause for this significant impairment is multifactorial and needs to be revealed to improve treatment strategies.

Promoting physical activity in children with juvenile idiopathic arthritis through an internet-based program: results of a pilot randomized controlled trial

Patients with juvenile idiopathic arthritis (JIA) are less physically active than healthy peers. Therefore, we developed an Internet‐based intervention to improve physical activity (PA). The aim of this study was to examine the effectiveness of the program in improving PA.

Muscles in motion: a randomized controlled trial on the feasibility, safety and efficacy of an exercise training programme in children and adolescents with juvenile dermatomyositis

OBJECTIVE To study for the first time in a randomized controlled trial the feasibility, safety and efficacy of an exercise training programme in children and adolescents with JDM. METHODS Patients were randomly assigned to the Intervention Group (IG; n = 14) or Waiting Control Group (WCG; n = 12). The intervention comprised an individually tailored 12-week home-based exercise programme of treadmill interval training and strength exercises. The efficacy of the IG over usual care (WCG) was examined with mixed linear regression (intention-to-treat). Effect sustainability during 12 weeks follow-up was also examined. RESULTS Seventy-five percent of the participants completed the intervention. Reasons for discontinuation were motivation/fatigue, recurrent infections and increasing physical complaints. No hospitalizations occurred and immune suppressive therapy remained stable or decreased in the patients who participated in the intervention. The estimated marginal means after the intervention period were significantly in favour of the IG compared with the WCG for standing long jump distance [difference between groups (95% CI): 13 cm (2-23)], the 30-s number of push-ups [8 (3-13)] and sit-ups [4 (0.4-8)], and the parent Childhood Health Assessment Questionnaire 30 + 8 score [-0.13 (-0.24 to - 0.01)] and effects sustained at follow-up. A trend was seen for the maximal oxygen uptake divided by body mass during maximal exercise treadmill testing; the IG scored 3.0 ml/kg/min (-1.3 to 7.3) higher compared with the WCG. Other outcomes (e.g. isometric muscle strength and perception of fatigue) did not differ between IG and WCG. CONCLUSION Exercise training is of value in the clinical management of JDM.

Assessment of disease activity by patients with juvenile idiopathic arthritis and the parents compared to the assessment by pediatric rheumatologists

BackgroundSelf assessment of arthritis is important for recognition of disease activity and early initiation of therapy. Proper interpretation of physical symptoms is necessary for this. The purpose was to investigate the assessment by patients and parents of disease activity in juvenile idiopathic arthritis (JIA) and to compare their assessments to rheumatologists’ assessments.MethodsPatients and parents assessed 69 joints on a paper homunculus and marked each joint with a different color according to presumed presence of disease: active disease (AD), doubt, and non-active disease (NAD). Their assessments were compared to the rheumatologists’ assessments. If patients and/or parents marked an inflamed joint, it counted as AD. Pain, functional impairment, and disease duration were analyzed to differentiate more precise between true and false positive and true and false negative assessments.ResultsWe collected assessments of 113 patients and/or parents. AD was assessed 54 times, 33 of which were true positives. NAD was assessed 23 times, 22 of which were true negatives. Doubt was expressed 36 times, 9 of which were assessed by the rheumatologist as AD. Sensitivity and specificity of AD was 0.77 and 0.31. Pain and functional impairment scored highest in AD, intermediate in doubt, and lowest in NAD.ConclusionPatients and/or parents seldom missed arthritis but frequently overestimated disease activity. Pain, functional impairment, disease duration, gender, and age did not differentiate between true and false positives for. Patients perceived JIA as active if they experienced pain and functional impairment. To reduce overestimation of the presence of AD we need to improve their understanding of disease activity by teaching them to distinguish between primary symptoms of JIA and symptoms like pain and functional impairment.

Fatigue in patients with juvenile idiopathic arthritis: A systematic review of the literature

OBJECTIVE To perform a systematic review of the current literature on studies related to fatigue in children with JIA. We studied the measurements that were used to assess fatigue and we focused on three outcome measurements, namely, (1) the prevalence of fatigue in JIA patients, (2) the determinants of and associations with fatigue in JIA patients, and (3) the impact of fatigue in JIA patients on daily life. METHODS A search was conducted in the electronic databases Pubmed and Embase from January 1, 2000 until August 27, 2015. The quality in prognostic factors (QUIPS) tool was used to assess the risk of bias (ROB) in the selected studies, focused on the outcome fatigue. Of all, two authors independently judged the ROB. RESULTS A total of 15 studies were included in this review. To assess fatigue, two unidimensional and three multidimensional scales were used, which hampered comparison. Fatigue was reported to be present in 60-76% of the patients with JIA and was related to time of day, disease activity, pain, psychosocial factors, and sleep. Minor consequences for daily life were found, though this was not studied extensively. CONCLUSION Fatigue is common in patients with JIA. The cause reflects a complex interplay of different factors. Based on results from this review and its body of knowledge, a conceptual model for fatigue in patients with JIA is proposed. Consensus is needed for future studies on how to assess fatigue. We promote the use of a combination of unidimensional and validated multidimensional measurements.

Internet program for physical activity and exercise capacity in children with juvenile idiopathic arthritis: a multicenter randomized controlled trial

To determine the effects of Rheumates@Work, an internet‐based program supplemented with 4 group sessions, aimed at improving physical activity, exercise capacity, health‐related quality of life (HRQoL), and participation in children with juvenile idiopathic arthritis.

Measuring Physical Activity in Juvenile Idiopathic Arthritis: Activity Diary Versus Accelerometer

Objective. (1) To determine convergent validity of an activity diary (AD) and accelerometer (Actical brand/Phillips-Respironics) in measuring physical activity (PA) in children with juvenile idiopathic arthritis (JIA). (2) To determine how many days give reliable results. (3) To analyze effects of correcting accelerometer data for non-wear. Methods. Patients with JIA (8–13 yrs) were recruited from 3 Dutch pediatric rheumatology centers. PA was assessed for 7 days with an AD and accelerometer, and was expressed as mean min/day of rest, light PA (LPA), moderate to vigorous PA (MVPA), and PA level (PAL). To analyze convergent validity, intraclass correlation coefficients (ICC) were calculated and paired sample Student t tests were performed. The required number of days to achieve reliable results was calculated using the Spearman-Brown prophecy formula. Results. Convergent validity between AD and accelerometer was moderate for rest and PAL (ICC 0.41). ICC for LPA and MVPA were < 0.24. AD overestimated PAL and MVPA compared with the accelerometer. Wearing the accelerometer 7–19 days gave reliable PA estimates on group and individual levels. For the AD, 13–36 days were needed. Adjusting accelerometer data for non-wear resulted in a clinically relevant higher mean number of min/day spent in LPA (effect size 1.12), but not in MVPA (effect size 0.44). Conclusion. Convergent validity between AD and accelerometer is moderate to poor. In children with JIA, 1-week assessment with an accelerometer is sufficient to measure PA (all levels) reliably. On an individual level and for clinical use, 3 weeks are required. Additional use of AD enables correction for non-wear of accelerometer data.

Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: a study protocol

BackgroundResearch on Juvenile Idiopathic Arthritis (JIA) should support patients, caregivers/parents (carers) and clinicians to make important decisions in the consulting room and eventually to improve the lives of patients with JIA. Thus far these end-users of JIA-research have rarely been involved in the prioritisation of future research.Main bodyDutch organisations of patients, carers and clinicians will collaboratively develop a research agenda for JIA, following the James Lind Alliance (JLA) methodology. In a ‘Priority Setting Partnership’ (PSP), they will gradually establish a top 10 list of the most important unanswered research questions for JIA. In this process the input from clinicians, patients and their carers will be equally valued. Additionally, focus groups will be organised to involve young people with JIA. The involvement of all contributors will be monitored and evaluated. In this manner, the project will contribute to the growing body of literature on how to involve young people in agenda setting in a meaningful way.ConclusionA JIA research agenda established through the JLA method and thus co-created by patients, carers and clinicians will inform researchers and research funders about the most important research questions for JIA. This will lead to research that really matters.

Fatigue in patients with Juvenile Idiopathic Arthritis

BackgroundFatigue is common in patients with JIA and affects daily life negatively. We assessed the presence and severity of fatigue in patients with JIA, including factors presumed associated with fatigue (e.g., disease activity, disability, pain, physical activity, exercise capacity, and self-efficacy), and whether fatigue is related to participation in physical education classes, school attendance, and sports frequency.MethodsThe current study used baseline data of 80 patients with JIA (age 8–13) who participated in an intervention aimed at promoting physical activity. Primary outcome measurements were fatigue, assessed using the Pediatric-Quality-of-Life-Inventory (PedsQl)-Fatigue-scale and energy level assessed using a VAS scale. Other outcome measurements were disease activity (VAS Physician Global Assessment Scale), disability (Childhood Health Assessment Questionnaire), physical activity (accelerometer), exercise capacity (Bruce treadmill test), self-efficacy (Childhood Arthritis Self-Efficacy Scale), and participation (self-report).ResultsSixty percent of patients with JIA suffered from daily low-energy levels; 27% suffered from very low-energy levels more than half the week. Low energy levels were best predicted by disability and low physical activity. Fatigue measured with the PEDsQL was higher compared to the control-population. Disability and low self-efficacy were main predictors of fatigue. Self-efficacy was a predictor of fatigue but did not act as moderator. Fatigue was a predictor for sports frequency but not for school attendance.ConclusionFatigue is a significant problem for JIA patients. Interventions aimed at reducing perceived disability, stimulating physical activity, and enhancing self-efficacy might reduce fatigue and thereby enhance participation.Trial registrationTrial number ISRCTN92733069

PReS-FINAL-2148: Rheumates@work a cognitive behavioural internet based intervention promoting physical activity in children with juvenile idiopathic arthritis: Preliminary results of a randomized clinical trail

Introduction: Juvenile Idiopathic Arthritis (JIA) is a chronic disease in which periods of active inflammation alternate with periods of inactive disease in an unpredictable way. Although impairments are most pronounced in children with disease activity, deficits like fatigue, decreased physical activity, low aerobic and anaerobic exercise remain impaired long after disease control is obtained. Exercise and physical activity (PA) can be seen as a type of behaviour. Therefore we expect that cognitive behavioural therapy (CBT) could be a successful approach to improve exercise capacity and PA levels in children with JIA. To increase PA levels in children with JIA an internet-based program has been developed. A pilot showed to be effective in improving PA and exercise capacity in children with JIA. Objectives: The aim of this multicenter study is to explore the efficacy of an internet based cognitive behavioural intervention Rheumates@work on PA and exercise capacity. Methods: We performed a randomized controlled trial. Patients with JIA aged 8-12 year, with access to internet were selected for this study. PA was measured with a 7-day activity diary and an Actical accelerometer. PA level was categorized by time spend on moderate to vigorous PA and the number of days with 1 hour of moderate to vigorous PA. Aerobic exercise capacity was assessed by the Bruce treadmill test expressed by walking time. Disease activity was assessed by using the JIA core set. Adherence was electronically monitored. Patients with low physical activity defined as equal to or less than three days of one hour of moderate to vigorous PA or with a low exercise capacity defined as less than P5 on the Bruce treadmill test were included. Results: Out of 83 selected patients, 49 eligible patients were included and randomized in the intervention (n = 28) and control waiting list group (n = 21). Adherence was good 26 out of 28 patients (93%) completed the program. The intervention group improved significantly in exercise capacity (p.01), and in number of minutes spend on vigorous activity (p.00). The control group did not improve significant. Disease activity did not increase in both groups. Conclusion: Preliminary results show that the internet based cognitive behavioural program rheumates@work was effective in improving exercise capacity and stimulated the patients to be more vigorously active. Rheumates@work is safe to administer.