共查询到20条相似文献,搜索用时 27 毫秒
1.
Andrea C. Barron Tsz‐Leung Lee Janalee Taylor Terry Moore Murray H. Passo T. Brent Graham Thomas A. Griffin Alexei A. Grom Daniel J. Lovell Hermine I. Brunner 《Arthritis care & research》2004,51(6):899-908
Objective
To assess the feasibility and construct validity of the willingness‐to‐pay (WTP) technique for measuring health care preferences in families of children with juvenile idiopathic arthritis (JIA).Methods
Parents were asked to estimate the monthly US dollar amount they would be willing to pay to obtain for their child the following hypothetical drugs: ARTHRO, which guarantees complete clinical response; and NO‐STOM‐ACHE, a drug that eliminates gastrointestinal (GI) symptoms. A yes/no question was used with random assignment of the starting bids. Parents who agreed to pay the starting bid were then asked whether they would be willing to pay 200% and then 400% of this initial bid. Socioeconomic data and information on medications, disease activity, patient physical function, wellbeing, and health‐related quality of life (HRQOL) were obtained.Results
Sixty‐two families of children with JIA were interviewed. GI symptoms were present in 54%, and 53% of the children had joints with active arthritis or limited range of motion. Four parents (7%) were unwilling to pay anything for any of the studied medications. The mean amount (median; mean percentage of available family income) families were willing to pay was $395 ($300; 15%) for ARTHRO and $109 ($80; 4%) for NO‐STOM‐ACHE. Correlation and regression analysis supported that, adjusted for the available family income, the WTP for ARTHRO was associated with disease activity, pain, and the HRQOL of the patients. After correction for the starting bids and the available family income, the WTP for NO‐STOM‐ACHE was associated with the patient's HRQOL, pain, and the amount of GI discomfort.Conclusion
The WTP technique is feasible and has construct validity for measuring health care preferences for children with JIA. Relatively large WTP estimates support a possible important negative impact of the disease on families of children with JIA.2.
Barron AC Lee TL Taylor J Moore T Passo MH Graham TB Griffin TA Grom AA Lovell DJ Brunner HI 《Arthritis and rheumatism》2004,51(6):899-908
OBJECTIVE: To assess the feasibility and construct validity of the willingness-to-pay (WTP) technique for measuring health care preferences in families of children with juvenile idiopathic arthritis (JIA). METHODS: Parents were asked to estimate the monthly US dollar amount they would be willing to pay to obtain for their child the following hypothetical drugs: ARTHRO, which guarantees complete clinical response; and NO-STOM-ACHE, a drug that eliminates gastrointestinal (GI) symptoms. A yes/no question was used with random assignment of the starting bids. Parents who agreed to pay the starting bid were then asked whether they would be willing to pay 200% and then 400% of this initial bid. Socioeconomic data and information on medications, disease activity, patient physical function, wellbeing, and health-related quality of life (HRQOL) were obtained. RESULTS: Sixty-two families of children with JIA were interviewed. GI symptoms were present in 54%, and 53% of the children had joints with active arthritis or limited range of motion. Four parents (7%) were unwilling to pay anything for any of the studied medications. The mean amount (median; mean percentage of available family income) families were willing to pay was $395 ($300; 15%) for ARTHRO and $109 ($80; 4%) for NO-STOM-ACHE. Correlation and regression analysis supported that, adjusted for the available family income, the WTP for ARTHRO was associated with disease activity, pain, and the HRQOL of the patients. After correction for the starting bids and the available family income, the WTP for NO-STOM-ACHE was associated with the patient's HRQOL, pain, and the amount of GI discomfort. CONCLUSION: The WTP technique is feasible and has construct validity for measuring health care preferences for children with JIA. Relatively large WTP estimates support a possible important negative impact of the disease on families of children with JIA. 相似文献
3.
Nicolino Ruperto Tracy Li Flavio Sztajnbok Claudia Goldenstein‐Schainberg Morton Scheinberg Inmaculada Calvo Penades Michael Fischbach Javier Orozco Alcala Christine Hom Lawrence Jung Loredana Lepore Sheila Oliveira Carol Wallace Maria Alessio Elisabetta Cortis Anne Eberhard Gabriele Simonini Irene Lemelle Elizabeth Candell Chalom Marleen Nys Edward H. Giannini 《Arthritis care & research》2010,62(11):1542-1551
Objective
To assess health‐related quality of life (HRQOL) in abatacept‐treated children/adolescents with juvenile idiopathic arthritis (JIA).Methods
In this phase III, double‐blind, placebo‐controlled trial, subjects with active polyarticular course JIA and an inadequate response/intolerance to ≥1 disease‐modifying antirheumatic drug (including biologics) received abatacept 10 mg/kg plus methotrexate (MTX) during the 4‐month open‐label period (period A). Subjects achieving the American College of Rheumatology Pediatric 30 criteria for improvement (defined “responders”) were randomized to abatacept or placebo (plus MTX) in the 6‐month double‐blind withdrawal period (period B). HRQOL assessments included 15 Child Health Questionnaire (CHQ) health concepts plus the physical (PhS) and psychosocial summary scores (PsS), pain (100‐mm visual analog scale), the Children's Sleep Habits Questionnaire, and a daily activity participation questionnaire.Results
A total of 190 subjects from period A and 122 from period B were eligible for analysis. In period A, there were substantial improvements across all of the CHQ domains (greatest improvement was in pain/discomfort) and the PhS (8.3 units) and PsS (4.3 units) with abatacept. At the end of period B, abatacept‐treated subjects had greater improvements versus placebo in all domains (except behavior) and both summary scores. Similar improvement patterns were seen with pain and sleep. For participation in daily activities, an additional 2.6 school days/month and 2.3 parents' usual activity days/month were gained in period A responders with abatacept, and further gains were made in period B (1.9 versus 0.9 [P = 0.033] and 0.2 versus ?1.3 [P = 0.109] school days/month and parents' usual activity days/month, respectively, in abatacept‐ versus placebo‐treated subjects).Conclusion
Improvements in HRQOL were observed with abatacept, providing real‐life tangible benefits to children with JIA and their parents/caregivers.4.
Allison Tong Julie Jones Jonathan C. Craig Davinder Singh‐Grewal 《Arthritis care & research》2012,64(9):1392-1404
Objective
To describe the experiences and perspectives of children and adolescents living with juvenile idiopathic arthritis (JIA).Methods
We conducted a systematic review of qualitative studies that explored the experiences of children living with JIA. We searched electronic databases (to week 2 of July 2011) and reference lists of relevant articles.Results
Twenty‐seven studies that reported the experiences of more than 542 participants were included. Six major themes were identified: aversion to being different (unrelenting and unpredictable pain, disablement, internal disfigurement, differential treatment, and forced dependency on others); striving for normality (preserving social identity, resourcefulness, sense of community, focus on remission, and mastery over body and pain); stigma and misunderstanding (trivialization of disease, invisible pain, and discrimination); suspension in uncertainty (control versus powerlessness, hope versus disappointment); managing treatment (benefits of taking medicines, respect and involvement in health care, and motivation for physical therapy); and desire for knowledge (medical treatment and advances, lifestyle management).Conclusion
JIA disrupts a child's sense of normality and impairs his or her capacity for social participation. Children with JIA have a sense of being misunderstood and stigmatized, and they feel perpetually caught between having hope and control over their bodies and overwhelming pain and despair. To increase their confidence, the ability to manage pain, and their resourcefulness for self‐management, children need ongoing information about treatments and lifestyle management, strong social support, community advocacy, and active involvement in their own health decision making. 相似文献5.
OBJECTIVE: To compare reactions to cold pressor pain and pain coping strategies of patients with juvenile idiopathic arthritis (JIA), healthy children, and their parents. METHODS: We studied 16 children with JIA and one of their parents and 14 healthy children and one of their parents. Patients with JIA were selected from the patient population by fulfilling criteria for inclusion in a "high pain" group (n = 7) of patients with modest clinical arthritis activity, but who presented daily reports of pain in connection with everyday activities, and a "low pain" group (n = 9) who presented significant clinical arthritis activity, but who had only a few complaints of pain related to everyday activities. Dependent variables included pain threshold, discomfort, intensity and tolerance to cold pressor pain, and pain coping strategies. RESULTS: Patients with JIA exhibited significantly lower mean pain tolerance than healthy children. Disease duration correlated with both experimental and clinical pain measures, and JIA patients used significantly more Behavioral Distraction than healthy children. Correlations were found between children's and parents' use of Approach and Distraction related coping strategies. Correlations were also found for the coping strategy of Catastrophizing in the JIA patient group. For experimental pain coping strategies, a significant correlation was found between the JIA patients' and their parents' use of Distraction. For the JIA patients Positive Self-statements and Behavioral Distraction were inversely correlated with the clinical pain measures. In both children and parents the experimental pain coping strategies of Catastrophizing and Distraction were associated with the experimental pain response measures, and low pain JIA patients tended to use more Distraction pain coping strategies than high pain patients. CONCLUSION: The results indicate that JIA patients may differ from healthy children with regard to their responses to experimental pain as well as to their use of pain coping strategies. Pain coping strategies of JIA patients were associated with pain coping strategies of their parents, and use of pain coping strategies was associated with both experimental and clinical pain experience. 相似文献
6.
Objective
To describe the health‐related quality of life (HRQOL) of adolescents with juvenile idiopathic arthritis (JIA), and to examine the usefulness of the Juvenile Arthritis Quality of Life Questionnaire (JAQQ) in a UK context. It was hypothesized that HRQOL would decrease with worsening disease and disability.Methods
Patients with JIA ages 11, 14, and 17 years were recruited from 10 major rheumatology centers. HRQOL was measured using the JAQQ. Other data were core outcome variables including the Childhood Health Assessment Questionnaire, demographic characteristics, arthritis‐related knowledge, and satisfaction with health care.Results
Questionnaires were completed by 308 adolescents. One‐fifth had persistent oligoarthritis. Median disease duration was 5.7 years (range <1–16 years). The JAQQ was shown to have good psychometric properties when used in the UK, but was not without limitations. HRQOL of adolescents with JIA was less than optimal, particularly in the domains of gross motor and systemic functioning. Items most frequently rated as adolescents' biggest psychological problems were “felt frustrated” and “felt depressed,” rated by 30.2% and 23.4%, respectively. These were particularly problematic for the 17‐year‐olds, with 39% reporting frustration as one of their biggest problems and 63.6% reporting depression. Variation in the adolescent JAQQ scores was explained by functional disability, pain, and disease activity.Conclusion
JIA can have a significant adverse effect on the HRQOL of adolescents. The JAQQ is a useful tool to assess the HRQOL of UK adolescents with JIA, but there is need for improved measures that incorporate developmentally appropriate issues.7.
Haverman L Grootenhuis MA van den Berg JM van Veenendaal M Dolman KM Swart JF Kuijpers TW van Rossum MA 《Arthritis care & research》2012,64(5):694-703
Objective
Children with juvenile idiopathic arthritis (JIA) experience functional impairment due to joint manifestations of the disease. The aim of our present study was to assess health‐related quality of life (HRQOL) and its predictors in a group of children and adolescents with JIA.Methods
The study sample includes all JIA patients (ages 6–18 years) who consulted a pediatric rheumatologist in Amsterdam, The Netherlands, between February 2009 and March 2010. HRQOL was measured using the Paediatric Quality of Life Inventory 4.0 (ages 6–18 years). Functional ability was measured using the Childhood Health Assessment Questionnaire, and medical and sociodemographic parameters were assessed. The study sample was compared to a Dutch youth norm population including children with other chronic health conditions. The proportion of children with JIA with an impaired HRQOL (<1 SD) was evaluated and multivariate regression analyses were performed to predict HRQOL outcome.Results
Of the eligible patients, 64.1% (n = 152) participated. Both children (ages 6–12 years) and adolescents (ages 13–18 years) with JIA reported a significantly lower HRQOL in almost all domains compared to either healthy controls or children with other chronic health conditions. Approximately half of the children with JIA showed an impaired HRQOL. The main predictors of HRQOL were functional ability, pain, subjective burden of medication use, and school absence.Conclusion
The HRQOL is severely affected in children and adolescents with JIA. These findings underline the necessity to systematically monitor HRQOL in daily clinical practice. 相似文献8.
Sawyer MG Whitham JN Roberton DM Taplin JE Varni JW Baghurst PA 《Rheumatology (Oxford, England)》2004,43(3):325-330
OBJECTIVES: To investigate the relationship between health-related quality of life (HRQL), experience of pain and pain coping strategies in children with juvenile idiopathic arthritis (JIA). To compare reports describing these variables obtained from children and their parents. METHODS: Participants were 59 children aged 8 to 18 yr with JIA and their parents. Parents and children completed the PedsQL generic core scales and arthritis module, the visual analogue scale of the Varni-Thompson Pediatric Pain Questionnaire, and the Waldron/Varni Pediatric Pain Coping Inventory. Parents rated children's functional disability using the Childhood Health Assessment Questionnaire. RESULTS: Parents reported significantly lower scores (indicating worse HRQL) than children on five of the eight PedsQL scales rating children's HRQL. Parents and children reported a significant negative relationship between pain levels and the PedsQL scores assessing children's physical, emotional and social functioning. They also reported a significant negative relationship between scores on several pain coping scales and scores on the PedsQL scales. However, the pattern of these relationships varied for reports from parents and children. CONCLUSIONS: Pain intensity and pain coping strategies have a significant and independent relationship with several domains that comprise the HRQL of children with JIA. However, parents and children have differing perceptions of the nature of these relationships. The differences emphasize the importance of clinicians obtaining information about children's HRQL, pain levels and pain coping strategies from both parents and children. 相似文献
9.
Objective
To examine the association between parent/proxy‐ and child‐reported fatigue and disease activity in children with polyarticular, extended oligoarticular, and persistent oligoarticular juvenile idiopathic arthritis (JIA).Methods
We enrolled a cross‐sectional cohort of 309 children recruited from the Seattle Children's Hospital rheumatology clinic from 2009–2011. Parents and children completed the PedsQL Multidimensional Fatigue Scales. The parent/proxy, child, and/or physician provided additional disease activity data at each clinic visit, including active joint count, pain, and the Childhood Health Assessment Questionnaire (C‐HAQ). Disease activity was dichotomized as active or inactive using the American College of Rheumatology provisional criteria for clinically inactive disease. The Juvenile Arthritis Disease Activity Score (JADAS) was also calculated. Linear regression was used to examine the associations between fatigue and disease activity.Results
Associations among fatigue, clinically inactive disease, and the JADAS were not statistically significant after controlling for pain. In the multivariable models of fatigue, the C‐HAQ and parent/child‐reported disease activity were significantly associated with fatigue; however, only the C‐HAQ remained significantly associated after adjustment for pain. The C‐HAQ and parent/child‐reported disease activity explained 17% and 30% of the variance in fatigue for the parent/proxy‐ and child‐reported multivariable models, respectively.Conclusion
In this cohort, functional ability, as measured by the C‐HAQ, was significantly associated with fatigue. Child‐ and parent/proxy‐reported pain were important confounders of the relationship between fatigue and disease activity. Routinely incorporating pain and fatigue into interventional and observational trials of JIA will enable better delineation of the relationships between these variables. 相似文献10.
Health‐Related Quality of Life in an Inception Cohort of Children With Juvenile Idiopathic Arthritis: A Longitudinal Analysis
下载免费PDF全文
![点击此处可从《Arthritis care & research》网站下载免费的PDF全文](/ch/ext_images/free.gif)
Kiem Oen Jaime Guzman Brenden Dufault Lori B. Tucker Natalie J. Shiff Karen Watanabe Duffy Jennifer J. Y. Lee Brian M. Feldman Roberta A. Berard Paul Dancey Adam M. Huber Rosie Scuccimarri David A. Cabral Kimberly A. Morishita Suzanne E. Ramsey Alan M. Rosenberg Gilles Boire Susanne M. Benseler Bianca Lang Kristin Houghton Paivi M. Miettunen Ga?lle Chédeville Deborah M. Levy Alessandra Bruns Heinrike Schmeling Elie Haddad Rae S. M. Yeung Ciarán M. Duffy the Research in Arthritis in Canadian Children emphasizing Outcomes investigators 《Arthritis care & research》2018,70(1):134-144
Objective
To describe changes in health‐related quality of life (HRQoL) over time in children with juvenile idiopathic arthritis (JIA), relative to other outcomes, and to identify predictors of unfavorable HRQoL trajectories.Methods
Children with JIA in the Research in Arthritis in Canadian Children emphasizing Outcomes (ReACCh‐Out) cohort were included. The Juvenile Arthritis Quality of Life Questionnaire (JAQQ, a standardized instrument), health‐related Quality of My Life (HRQoML, an instrument based on personal valuations), and JIA core variables were completed serially. Analyses included median values, Kaplan‐Meier survival curves, and latent trajectory analysis.Results
A total of 1,249 patients enrolled at a median of 0.5 months after diagnosis were followed for a median of 34.2 months. The degree of initial HRQoL impairment and probabilities of reaching the best possible HRQoL scores varied across JIA categories (best for oligoarthritis, worst for rheumatoid factor–positive polyarthritis). Median times to attain best possible HRQoL scores (JAQQ 59.3 months, HRQoML 34.5 months), lagged behind those for disease activity, pain, and disability measures. Most patients followed trajectories with minimal or mild impairment; however, 7.6% and 13.8% of patients, respectively, followed JAQQ and HRQoML trajectories with persistent major impairment in HRQoL. JIA category, aboriginal ethnicity, and baseline disease activity measures distinguished between membership in trajectories with major and minimal impairments.Conclusion
Improvement in HRQoL is slower than for disease activity, pain, and disability. Improvement of a measure based on respondents’ preferences (HRQoML) is more rapid than that of a standardized measure (JAQQ). Higher disease activity at diagnosis heralds an unfavorable HRQoL trajectory. 相似文献11.
Sheila Oliveira Angelo Ravelli Angela Pistorio Esteban Castell Clara Malattia Anne Marie Prieur Claudia Saad‐Magalhães Kevin J. Murray Sang‐Cheol Bae Rik Joos Ivan Foeldvari Carolina Duarte‐Salazar Nico Wulffraat Pekka Lahdenne Pavla Dolezalova Jaime de Inocencio Florence Kanakoudi‐Tsakalidou Michael Hofer Irina Nikishina Huri Ozdogan Philip J. Hashkes Jeanne M. Landgraf Alberto Martini Nicolino Ruperto 《Arthritis care & research》2007,57(1):35-43
Objective
To investigate the proxy‐reported health‐related quality of life (HRQOL) and its determinants in patients with juvenile idiopathic arthritis (JIA).Methods
In this multinational, multicenter, cross‐sectional study, HRQOL of patients with JIA was assessed through the Child Health Questionnaire (CHQ) and was compared with that of healthy children of similar age from the same geographic area. Potential determinants of HRQOL included demographic data, physician's and parent's global assessments, measures of joint inflammation, Childhood Health Assessment Questionnaire (CHAQ), and erythrocyte sedimentation rate.Results
A total of 6,639 participants (3,324 with JIA and 3,315 healthy) were enrolled from 32 countries. The mean ± SD physical and psychosocial summary scores of the CHQ were significantly lower in patients with JIA than in healthy children (physical: 44.5 ± 10.6 versus 54.6 ± 4.0, P < 0.0001; psychosocial: 47.6 ± 8.7 versus 51.9 ± 7.5, P < 0.0001), with the physical well‐being domain being most impaired. Patients with persistent oligoarthritis had better HRQOL compared with other subtypes, whereas HRQOL was similar across patients with systemic arthritis, polyarthritis, and extended oligoarthritis. A CHAQ score >1 and a pain intensity rating >3.4 cm on a 10‐cm visual analog scale were the strongest determinants of poorer HRQOL in the physical and psychosocial domains, respectively.Conclusion
We found that patients with JIA have a significant impairment of their HRQOL compared with healthy peers, particularly in the physical domain. Physical well‐being was mostly affected by the level of functional impairment, whereas the intensity of pain had the greatest influence on psychosocial health. 相似文献12.
Kiem Oen Lori Tucker Adam M. Huber Paivi Miettunen Rosie Scuccimarri Sarah Campillo David A. Cabral Brian M. Feldman Shirley Tse Gaëlle Chédeville Lynn Spiegel Rayfel Schneider Bianca Lang Janet Ellsworth Suzanne Ramsey Paul Dancey Earl Silverman Anne‐Laure Chetaille Bonnie Cameron Nicole Johnson Jean Dorval Ross E. Petty Karen Watanabe Duffy Gilles Boire Elie Haddad Kristin Houghton Claire Saint‐Cyr Stuart E. Turvey Susanne Benseler Mary Cheang Rae S. M. Yeung Ciarán M. Duffy 《Arthritis care & research》2009,61(8):1077-1086
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. 相似文献13.
A. Lurati I. Pontikaki B. Teruzzi F. Desiati V. Gerloni M. Gattinara R. Cimaz F. Fantini 《Arthritis \u0026amp; Rheumatology》2006,54(5):1602-1607
Objective
There are no validated criteria to evaluate clinical response in juvenile idiopathic arthritis (JIA). The purpose of this study was to compare 4 sets of criteria (2 from the American College of Rheumatology [ACR] and 2 from the European League Against Rheumatism [EULAR]) for clinical response evaluation in JIA patients treated with methotrexate and/or anti–tumor necrosis factor α drugs.Methods
Seventy‐five patients with JIA were evaluated at baseline and after 6 months of therapy with second‐line drugs. Mean age at study onset was 12.8 years (range 2–32.9 years). Diagnoses were systemic JIA (n = 16), rheumatoid factor–positive JIA (n = 5), rheumatoid factor–negative JIA (n = 9), persistent oligoarticular JIA (n = 10), extended oligoarticular JIA (n = 33), and psoriatic arthritis (n = 2). Clinical response was evaluated with the ACR Pediatric 30 criteria and the ACR 20% response criteria (ACR20), and with the EULAR Disease Activity Score (DAS) and 28‐joint DAS (DAS28). Patients with EULAR criteria responses of “good” or “moderate” were classified as responders. Responders and nonresponders according to the different criteria were then compared.Results
For patients younger than 16 years, Cohen's kappa varied between 0.51 and 0.72, with a good‐to‐excellent reproducibility index for all comparisons, except for the DAS28/ACR20 comparison. The best agreement was obtained by comparing the DAS and the ACR Pediatric 30. For patients older than 16 years, the reproducibility index was good or excellent in only 2 cases, i.e., comparing the DAS and the ACR Pediatric 30 and comparing the DAS and the DAS28 (as expected).Conclusion
Our study shows a good agreement overall for the different criteria tested. The highest concordance was observed between the DAS and the ACR Pediatric 30, the lowest between the DAS28 and the ACR20. Our data suggest that the ACR Pediatric 30 criteria can be used also in adult patients affected by JIA, and that the original DAS can be an alternative to the ACR Pediatric 30 in both children and young adults with JIA.14.
Ward TM Ringold S Metz J Archbold K Lentz M Wallace CA Landis CA 《Arthritis care & research》2011,63(7):1006-1012
Objective
To compare sleep disturbances and neurobehavioral function in children with juvenile idiopathic arthritis (JIA) to age‐ and sex‐matched control children.Methods
Children (n = 116) ages 6–11 years with (n = 70) and without (n = 46) JIA and their parents participated. Parents completed questionnaires on sleep habits, sleep behavior, and school competence of their children; children completed computerized neurobehavioral performance tests.Results
Compared to control children, children with JIA had a statistically significant (P < 0.001) greater mean overall sleep disturbance score and higher scores on 6 of 8 subscales (all P < 0.03) of the Children's Sleep Habits Questionnaire (CSHQ). There were no group differences on neurobehavioral performance test scores. However, regardless of group, children with an overall CSHQ score above an established cutoff for clinically significant sleep disturbances had slower mean simple reaction time (t = ?2.2, P < 0.03) and mean 5‐choice reaction time (t = ?2.3, P < 0.02) compared to those below the cutoff score. The CHSQ overall sleep disturbance score predicted reaction time (P < 0.009) after controlling for age, intelligence quotient, medication, and group.Conclusion
Children with JIA have more parent‐reported sleep disturbances, but performed as well as control children on a series of standardized computer tests of neurobehavioral performance. Children with more disturbed sleep had slower reaction times.15.
Georgia Tsipoura Helen Lazaratou Dimitrios Damigos Olga Vougiouka 《The Egyptian Rheumatologist》2018,40(3):197-201
Aim of the work
To describe and compare sleep disturbance in children and adolescents with inactive juvenile idiopathic arthritis (JIA) and to study their relation to health-related quality of life (HRQoL).Patients and methods
Fifty JIA patients and 50 controls along with their parents were studied. Sleep disturbance was assessed by the Children's Sleep Habits Questionnaire (CSHQ) and HRQoL was assessed according to the revised KINDLR questionnaire.Results
The 50 JIA children were 14 boys (28%) and 36 girls (72%); 58% children and 42% adolescent. The mean age of participants was comparable between boys (11.6?±?2.9 years) and girls (11.4?±?3.3?years) either in JIA (p?=?.76) or control (p?=?.56). Patients enrolled had enthesitis-related arthritis in 6(12%), RF-positive polyarthritis in 8(16%), oligoarthritis in 32(64%), systemic arthritis in 2(4%) and psoriatic arthritis in 2(4%). Patients had higher CSHQ score (45.5?±?8.2) and a lower KINDLR (72.4?±?16.8) compared to the control (40.4?±?3.4 and 78.3?±?5.4; p?<?.0001 and p?=?.02 respectively). There were no differences between children and adolescents however, Sleep Onset Delay was significantly highest in systemic-onset children (p?=?.028) and KINDLR emotional subscale was significantly increased in those with oligoarthritis (81.6?±?16.6) (p?=?.02). All subscales significantly correlated with their corresponding total score (p?<?.01). Age at onset” with Emotional subscale were predictive of poor sleep and with number of hospitalizations for poor quality of life.Conclusions
Children and adolescents with inactive JIA, while taking medications, experience more disturbed sleep than matched control. This disturbance in their sleep entails in significant lower levels of HRQoL. 相似文献16.
Kiran Nistala Halima Moncrieffe Katy R. Newton Hemlata Varsani Patricia Hunter Lucy R. Wedderburn 《Arthritis \u0026amp; Rheumatology》2008,58(3):875-887
Objective
To identify interleukin‐17 (IL‐17)–producing T cells from patients with juvenile idiopathic arthritis (JIA), and investigate their cytokine production, migratory capacity, and relationship to Treg cells at sites of inflammation, as well as to test the hypothesis that IL‐17+ T cell numbers correlate with clinical phenotype in childhood arthritis.Methods
Flow cytometry was used to analyze the phenotype, cytokine production, and chemokine receptor expression of IL‐17–producing T cells in peripheral blood and synovial fluid mononuclear cells from 36 children with JIA, in parallel with analysis of forkhead box P3 (FoxP3)–positive Treg cells. Migration of IL‐17+ T cells toward CCL20 was assessed by a Transwell assay. Synovial tissue was analyzed by immunohistochemistry for IL‐17 and IL‐22.Results
IL‐17+ T cells were enriched in the joints of children with JIA as compared with the blood of JIA patients (P = 0.0001) and controls (P = 0.018) and were demonstrated in synovial tissue. IL‐17+ T cell numbers were higher in patients with extended oligoarthritis, the more severe subtype of JIA, as compared with patients with persistent oligoarthritis, the milder subtype (P = 0.046). Within the joint, there was an inverse relationship between IL‐17+ T cells and FoxP3+ Treg cells (r = 0.61, P = 0.016). IL‐17+,CD4+ T cells were uniformly CCR6+ and migrated toward CCL20, but synovial IL‐17+ T cells had variable CCR4 expression. A proportion of IL‐17+ synovial T cells produced IL‐22 and interferon‐γ.Conclusion
This study is the first to define the frequency and characteristics of “Th17” cells in JIA. We suggest that these highly proinflammatory cells contribute to joint pathology, as indicated by relationships with clinical phenotypes, and that the balance between IL‐17+ T cells and Treg cells may be critical to outcome.17.
18.
Kiem Oen Shirley M. L. Tse Suzanne Ramsey Janet Ellsworth Gaëlle Chédeville Anne‐Laure Chetaille Claire Saint‐Cyr David A. Cabral Lynn R. Spiegel Bianca Lang Adam M. Huber Paul Dancey Alan M. Rosenberg Bonnie Cameron Nicole Johnson Jean Dorval Rosie Scuccimarri Sarah Campillo Karen N. Watanabe Duffy Gilles Boire Elie Haddad Kristin Houghton Stuart E. Turvey Paivi Miettunen Katherine Gross Jaime Guzman Susanne Benseler Brian M. Feldman Victor Espinosa Rae S. M. Yeung Lori Tucker 《Arthritis care & research》2010,62(4):527-536
Objective
To determine early outcomes and early improvements in a prospective inception cohort of children with juvenile idiopathic arthritis (JIA) treated with current standard therapies.Methods
Patients selected were enrolled in an inception cohort of JIA, the Research in Arthritis in Canadian Children Emphasizing Outcomes Study. The juvenile rheumatoid arthritis core criteria set measures were completed at enrollment and 6 months later. Frequencies of normal values for each of the core set measures and the American College of Rheumatology (ACR) Pediatric 30, 50, and 70 (Pedi 70) criteria response rates achieved at 6 months after enrollment were calculated for each JIA‐onset subtype group.Results
Among 354 patients in the study, the median interval between diagnosis and enrollment was 0.7 months. At 6 months after enrollment, median values of active joint counts were highest in patients with rheumatoid factor (RF)–positive polyarthritis ( 4 ) and RF‐negative polyarthritis ( 2 ), but were 0 or 1 for other subtypes. Fifty percent or more of patients with oligoarthritis, systemic arthritis, enthesitis‐related arthritis, and undifferentiated arthritis had no active joints, and the ACR Pedi 70 criteria response rate was 48% or more in those with oligoarthritis, RF‐negative polyarthritis, and systemic arthritis.Conclusion
With current management strategies in clinical practice, improvement in disease activity was noted in considerable proportions of patients in all of the JIA subtype groups, but low levels of disease activity persisted in many. We expect that these early outcomes will prove to be significant predictors of long‐term outcomes. 相似文献19.
Wallace CA Giannini EH Huang B Itert L Ruperto N;Childhood Arthritis Rheumatology Research Alliance;Pediatric Rheumatology Collaborative Study Group;Paediatric Rheumatology International Trials Organisation 《Arthritis care & research》2011,63(7):929-936
Objective
To prospectively validate the preliminary criteria for clinical inactive disease (CID) in patients with select categories of juvenile idiopathic arthritis (JIA).Methods
We used the process for development of classification and response criteria recommended by the American College of Rheumatology Quality of Care Committee. Patient‐visit profiles were extracted from the phase III randomized controlled trial of infliximab in polyarticular‐course JIA (i.e., patients considered to resemble those with select categories of JIA) and sent to an international group of expert physician raters. Using the physician ratings as the gold standard, the sensitivity and specificity were calculated using the preliminary criteria. Modifications to the criteria were made, and these were sent to a larger group of pediatric rheumatologists to determine quantitative, face, and content validity.Results
Variables weighted heaviest by physicians when making their judgment were the number of joints with active arthritis, erythrocyte sedimentation rate (ESR), physician's global assessment, and duration of morning stiffness. Three modifications were made: the definition of uveitis, the definition of abnormal ESR, and the addition of morning stiffness. These changes did not alter the accuracy of the preliminary set.Conclusion
The modified criteria, termed the “criteria for CID in select categories of JIA,” have excellent feasibility and face, content, criterion, and discriminant validity to detect CID in select categories of JIA. The small changes made to the preliminary criteria set did not alter the area under the receiver operating characteristic curve (0.954) or accuracy (91%), but have increased face and content validity. 相似文献20.