To assess which clinical features are most important for patients, parents, and clinicians in the course of juvenile idiopathic arthritis (JIA).
Forty-nine people participated in 6 audience-specific ...focus group discussions and 112 reciprocal interviews in 3 Canadian cities. Participants included youth with JIA, experienced English- and French-speaking parents, novice parents (<6 mos since diagnosis), pediatric rheumatologists, and allied health professionals. Participants discussed the importance of 34 JIA clinical features extracted from medical literature. Transcripts and interview reports underwent qualitative analysis to establish relative priorities for each group.
Most study participants considered medication requirements, medication side effects, pain, participant-defined quality of life, and active joints as high priority clinical features of JIA. Active joint count was the only American College of Rheumatology core variable accorded high or medium priority by all groups. Rheumatologists and allied health professionals considered physician global assessment as high priority, but it had very low priority for patients and parents. The parent global assessment was considered high priority by clinicians, medium to high by parents, and low by patients. Child Health Assessment Questionnaire scores were considered low priority by patients and parents, and moderate or high by clinicians. The number of joints with limited motion was given low to very low priority by all groups. Parents gave high priority to arthritis flares.
If our findings are confirmed, medication requirements, medication side effects, pain, participant-defined quality of life, and active joint counts should figure prominently in describing the course of JIA.
It has been well established that children with a chronic disease, including those with inflammatory bowel disease (IBD) and juvenile idiopathic arthritis (JIA), report lower health-related quality ...of life (HRQOL) as compared to their healthy peers. Over the past 20 years there has been a significant emphasis on the development of measures of function and HRQOL for application in JIA and pediatric IBD. Several of the instruments currently used to assess HRQOL in children with immune-mediated inflammatory diseases (IMID), including the Juvenile Arthritis Quality of Life Questionnaire (JAQQ) and IMPACT questionnaire for pediatric IBD, were developed and validated by Canadian-based research teams. This review describes several disease-specific and generic instruments used to assess QOL in children with IBD or JIA. It also provides an overview of findings from several outcomes studies that applied the described tools in assessing HRQOL in children and adolescents with these conditions.
The objectives of this study were (1) to examine the association between the use of complementary and alternative healthcare (CAHC) and subsequent health outcomes; and (2) to explore the association ...between CAHC use and adherence to conventional treatments in children with juvenile idiopathic arthritis (JIA).
A cohort of children with JIA (n = 182, mean age 10 yrs) who attended outpatient clinics were followed for one year. We evaluated the use of CAHC, health-related quality of life (HRQOL), global health, physical functioning, pain, and disease severity at 3-month intervals. We also evaluated perceived adherence to treatments. General estimating equations were performed to determine the association between use of CAHC and subsequent outcomes while controlling for possible confounders.
CAHC was used by 36.4% of participants over the 12-month period. Use of CAHC was associated with subsequent lower global health and physical functioning despite higher adherence to prescribed medications as assessed by the rheumatologist (p < 0.05). Use of CAHC was not associated with subsequent improved HRQOL or decreased pain or disease severity.
Children with JIA who use CAHC do not have improved outcomes, at least over the relatively short term. Nevertheless, they seem to be more adherent to conventional treatment according to the rheumatologist.
ObjectiveTo determine cancer incidence in a large clinical juvenile-onset arthritis population.MethodsWe combined data from 6 existing North American juvenile-onset arthritis cohorts. Patients with ...juvenile-onset arthritis were linked to regional cancer registries to detect incident cancers after cohort entry, defined as first date seen in the paediatric rheumatology clinic. The expected number of malignancies was obtained by multiplying the person-years observed (defined from cohort entry to end of follow-up) by the geographically matched age, sex and calendar year-specific cancer rates. The standardised incidence ratios (SIR; ratio of cancers observed to expected) were generated, with 95% CIs.ResultsThe 6 juvenile arthritis registries provided a total of 5294 patients. The mean age at cohort entry was 8.9 (SD 5.0) years and 68% of participants were female. The mean duration of follow-up was 6.8 years with a total of 36 063 person-years spanning 1978–2012. During follow-up, 9 invasive cancers occurred, compared with 10.9 expected (SIR 0.82, 95% CI 0.38 to 1.5). 3 of these were haematological (Hodgkin's, non-Hodgkin's lymphoma and leukaemia). 6 of the patients with cancer were exposed to disease-modifying drugs; 5 of these had also been exposed to biological agents.ConclusionsWe did not clearly demonstrate an increase in overall malignancy risk in patients with juvenile-onset arthritis followed for an average of almost 7 years. 3 of the 9 observed cancers were haematological. 5 of the cancers arose in children exposed to biological agents. Longer follow-up of this population is warranted, with further study of drug effects.
Background/Purpose:
Children with juvenile idiopathic arthritis may be less involved in leisure activities compared to their healthy peers in part due to disease related factors such as pain, joint ...stiffness and tenderness. The main purpose of our study was to describe involvement in leisure activities, as well as to identify potential socio‐demographic, disease‐related, personal and environmental determinants.
Methods:
Ninety three children and youth aged 8 to 18 years diagnosed with juvenile idiopathic arthritis (JIA) and their families participated in this cross‐sectional study. Children and youth were administered the Children's Assessment of Participation and Enjoyment (CAPE), which measures involvement in leisure activities (recreation, physical, social, skill‐based, self‐improvement). The disease characteristics were ed from the child's medical file (JIA sub‐type, active joint count, age of diagnosis), pain perception, functional status, motivation, self‐perception and perceived social support were obtained through self‐report. Parents completed questionnaires on socio‐demographic data, as well as on family function and environmental barriers. Multiple linear regression was used for data analysis.
Results:
The leisure activities completed by most participants (>90%) were playing computer/video games, watching television, hanging out with friends and doing homework. Least popular activities were (h10%) martial arts, gymnastics and horseback riding. The level of enjoyment was highest for social activities (mean: 4.2+0.5). Involvement in active physical activities was negatively associated with the presence of active disease (β = −0.385, p = 0.028). However a higher level of perceived athletic competence was associated with greater intensity in active physical activities (β = 0.261, p = 0.037). Higher environmental barrier scores were negatively associated with involvement in social (β = −0.222, p = 0.023) leisure activities.
Conclusion:
Disease activity may dissuade children and youth from participating in more active pursuits, which places them at greater risk for adopting sedentary lifestyles. There is evidence that contextual factors (personal and environmental) influence leisure participation. The identification of determinants of leisure activities in children and youth with arthritis may allow healthcare professionals to assess children's health needs with more precision and promote a healthier lifestyle.
Lupus cystitis is a rare interstitial inflammatory disease of the bladder seen in systemic lupus erythematosus that usually occurs in association with gastrointestinal manifestations, and ...occasionally with central nervous system involvement. There are few reported pediatric cases. We describe this entity as the presenting manifestations of lupus in an adolescent female.
This case report is based on the clinical observation of a patient with juvenile systemic lupus erythematosus (SLE) who developed transient galactorrhea. The subsequent literature review documented ...an interesting association between prolactin and rheumatic diseases and in particular, hyperprolactinemia and SLE. The discussion that follows the case report explores this relationship and proposes a hypothesis regarding why this patient with juvenile SLE developed galactorrhea.
Objective
To determine early predictors of 6‐month outcomes in a prospective cohort of patients with juvenile idiopathic arthritis (JIA).
Methods
Patients selected were those enrolled in an inception ...cohort study of JIA, the Research in Arthritis in Canadian Children Emphasizing Outcomes Study, within 6 months after diagnosis. The juvenile rheumatoid arthritis core criteria set and quality of life measures were collected at enrollment and 6 months later. Outcomes evaluated included inactive disease, Juvenile Arthritis Quality of Life Questionnaire (JAQQ) scores, and Childhood Health Assessment Questionnaire (C‐HAQ) scores at 6 months.
Results
Thirty‐three percent of patients had inactive disease at 6 months. Onset subtype and most baseline core criteria set measures correlated with all 3 outcomes. Relative to oligoarticular JIA, the risks of inactive disease were lower for enthesitis‐related arthritis, polyarthritis rheumatoid factor (RF)–negative JIA, and polyarthritis RF‐positive JIA, and were similar for psoriatic arthritis. In multiple regression analyses, the baseline JAQQ score was an independent predictor of all 3 outcomes. Other independent baseline predictors included polyarthritis RF‐negative and systemic JIA for inactive disease; C‐HAQ score and polyarthritis RF‐positive JIA for the 6‐month C‐HAQ score; and active joint count, pain, and time to diagnosis for the 6‐month JAQQ score.
Conclusion
Clinical measures soon after diagnosis predict short‐term outcomes for patients with JIA. The JAQQ is a predictor of multiple outcomes. Time to diagnosis affects quality of life in the short term.
To present preliminary data on incidence of malignancy in juvenile idiopathic arthritis (JIA), compared to general population rates.
We examined cancer occurrence within JIA registries at 3 Canadian ...pediatric rheumatology centers. The subjects in the clinic registries were linked to regional tumor registries to determine the occurrence of invasive cancers over the observation period (spanning 1974-2006). The total number of cancers expected was determined by multiplying the person-years in the cohort by age, sex, and calendar year-specific cancer rates. The standardized incidence ratio (SIR, ratio of cancers observed to expected) was generated, with 95% confidence intervals.
The study sample consisted of 1834 patients. The female proportion was 67.6%; average age at entry to cohort was 8.6 years (SD 5.1). The majority were Caucasian. Subjects contributed 22,341 patient-years (average 12.2, SD 7.8). Within this observation period, one invasive cancer occurred, compared to 7.9 expected (SIR 0.12, 95% CI 0.0, 0.70). This was a hematological cancer (Hodgkin's lymphoma), representing a SIR for hematological malignancies of 0.76 (95% CI 0.02, 4.21).
Only one invasive cancer was identified in this large sample of individuals with JIA, observed for an average of 12.2 years each. These data suggest that, at least in the initial years following diagnosis of JIA, the risk of invasive cancers overall is not markedly increased. The results do not rule out the possibility of a baseline increased risk of hematological malignancies.
Parents of children with a chronic condition such as juvenile arthritis must cope with greater demands than those living with a healthy child. They must adopt different behaviours in order to lessen ...the impact on the family structure. Parental coping refers to the parent's specific cognitive and behavioural efforts to reduce or manage a demand on the family system. The aims of this study were: to describe coping in a cohort of parents of children with JIA; to determine whether quality of life is associated with parental coping; to explore whether socio-demographic factors such as child's age, family socioeconomic status and family structure are associated with parental coping. One hundred eighty-two parents caring for a child with JIA completed a postal survey at three times over a one-year period, which included the Juvenile Arthritis Quality of Life Questionnaire (JAQQ), the Coping Health Inventory for Parents (CHIP) and questionnaires describing socio-demographic characteristics. Linear mixed models were employed to analyse the association between the child's quality of life and parental coping. Mean total QoL scores (JAQQ) showed that children experienced difficulty in completing specified activities at most just below 25% of the time and results fall off slightly following the 6 month time point. Mean parental coping scores for the CHIP subscales at baseline were 38.4 +/- 9.0, 33.4 +/- 11.6, 16.5 +/- 6.1, for Maintaining Family Integration (maximum score 57), Maintaining Social Support (maximum score 54) and Understanding the Medical Situation (maximum score 24), respectively. Understanding the Medical Situation was deemed most useful. The child's QoL was associated with parental coping. Parents of children with greater psychosocial dysfunction used more coping behaviours related to Understanding the Medical Situation (beta coefficient, 0.73; 95% CI, 0.01, 1.45). These findings underscore the importance of helping parents of children with JIA better understand their child's medical situation.
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