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1.
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
2.
Debbie Ehrmann Feldman Mirella De Civita Patricia L. Dobkin Peter N. Malleson Garbis Meshefedjian Ciarán M. Duffy 《Arthritis care & research》2007,57(6):905-912
Objective
To determine the impact of adherence to treatment (medication and prescribed exercise) on outcomes in children with juvenile idiopathic arthritis (JIA).Methods
In this longitudinal study, we studied parents of patients with JIA at the Montreal Children's Hospital and British Columbia Children's Hospital in Vancouver. Adherence was evaluated on a visual analog scale in the Parent Adherence Report Questionnaire. Outcomes of interest were active joint count, pain, child functional score on the Child Health Assessment Questionnaire, quality of life score on the Juvenile Arthritis Quality of Life Questionnaire, and parental global impression of overall well‐being. The association between adherence to treatment and subsequent outcomes was evaluated using generalized estimating equations and logistic regression.Results
Mean age and disease duration of our sample of 175 children were 10.2 and 4.1 years, respectively. Moderate adherence to medication was associated with lower active joint count (odds ratio [OR] 0.47, 95% confidence interval [95% CI] 0.22–0.99). Moderate adherence to exercise was associated with better functional score (OR 0.13, 95% CI 0.03–0.54), and lower pain during the last week (OR 0.14, 95% CI 0.04–0.50). Both high and moderate adherence to exercise were associated with parental perception of global improvement.Conclusion
Improved outcomes in patients who adhered to treatment underscores the need for clinicians to address adherence issues with their patients. Sustaining adherence, particularly to the more time‐consuming treatment of exercise, is a challenge. 相似文献3.
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.4.
Amine B Rostom S Benbouazza K Abouqal R Hajjaj-Hassouni N 《Rheumatology international》2009,29(3):275-279
This study aimed to investigate the proxy-reported Health related quality of life (HRQOL) and its determinants in patients
with juvenile idiopathic arthritis (JIA). It was hypothesized that HRQOL would decrease with worsening disease and disability.
Data were available in cross-sectional study on children and adolescents with JIA according to the ILAR criteria. Patient
demographics, type of JIA, clinical determinants and laboratory parameters relating to JIA were obtained for each patient.
Functional disability was assessed using the parent’s or children’s version of the child health assessment questionnaire (CHAQ).
The HRQOL was evaluated using the juvenile arthritis quality of life questionnaire (JAQQ). These questionnaires were previously
translated and validated in Moroccan children. A total of 80 participants were enrolled with mean age of 11 [6–17 years],
and female predominance (59%). Many patients (42.5%) had oligoarticular subtype; 31.3% polyarticular subtypes and 26.2% systemic
form. The mean global score of JAQQ was 2.6 ± 1.3 (1–6). Patients with persistant oligoarticular had better gross motor function
(P < 0.0001), better fine motor function (P < 0.0001), less psychosocial impact (P = 0.001), and less symptoms (P = 0.001) in comparison with polyarticular and systemic subtypes. The HRQOL assessed by the JAQQ was worse in adolescent patients
in comparison with children except for symptoms (P = 0.15). The gender (P = 0.95), age at onset of JIA (P = 0.81), and evolution duration (P = 0.34) were not correlated with global score of JAQQ. The diagnosis delay was significantly associated with decrease of
HRQOL (P = 0.001). The decrease of HRQOL was correlated with disease activity [pain (VAS), painful and swollen joints, erythrocyte
sedimentation rate (for P < 0.0001)], with disability index (CHAQ) (P = 0.001) and presence of hip involvement (P = 0.01). This study suggests that JIA can have a significant adverse effect on the HRQOL of moroccan patients, particularly
adolescents with polyarticular and systemic subtypes. Disease duration, disability score (CHAQ) and pain were the strongest
determinants of poorer HRQOL. 相似文献
5.
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6.
There is currently no agreement on how to classify and diagnose reactive arthritis (ReA) and what kind of clinical and laboratory findings are specific for the diagnosis. This study retrospectively analyzed the initial clinical manifestations and laboratory findings in children diagnosed with ReA and juvenile idiopathic arthritis (JIA). A comparison was also made between these two groups to see if there were differences. A retrospective chart review was performed and 44 patients diagnosed with ReA and 80 patients with JIA were enrolled in this study. Their initial clinical manifestations and laboratory findings were also analyzed and compared. The initial clinical manifestations in ReA were analyzed including the demographic data, the preceding infection history, the duration of the infectious episode to the onset of arthritis, the duration of arthritic symptoms, and the involved joint pattern. Comparison of the initial laboratory findings between patients with ReA and JIA showed significant differences between erythrocyte sedimentation rates (ESR) in the first hour, platelet counts (p<0.05), and ESR in the second hour (p=0.052). Further, comparing ReA with the subtypes of JIA, significant differences were noted between ReA and the systemic type in terms of hemoglobin level, platelet counts, C-reactive protein, and first and second hour ESR (p<0.05). However, if compared with the polyarticular or pauciarticular type, only the platelet counts showed any significant statistical difference (p<0.05). This study summarizes clinical experiences in ReA. The differences in laboratory findings of ReA and JIA may provide a clue in making a differential diagnosis. 相似文献
7.
Objective
To examine whether pain‐specific beliefs and coping strategies of patients with juvenile idiopathic arthritis (JIA) independently predict their reported pain, while controlling for relevant demographic variables, disease activity, and parent‐rated disability. To compare use of pain‐coping strategies and pain‐related beliefs of a selected subgroup of patients with high pain and low disease activity (high pain group) with the remaining patients.Methods
Children with JIA (n = 56) completed the Pain Coping Questionnaire, a revised version of the Survey of Pain Attitudes, and a 3‐week pain diary. The parents completed the Childhood Health Assessment Questionnaire (CHAQ). Second order principal component analyses were conducted in order to reduce the number of independent variables. Regression analyses of the dependent measure were performed. The use of coping strategies and health beliefs were compared using t‐tests for independent samples. Pearson's correlation coefficients were calculated to examine the direct associations between each individual coping and belief scale, and the pain measure.Results
Only the CHAQ and the cognitive belief composite factor score made statistically significant contribution to the prediction of pain after controlling for other variables. Significant differences were found between the scores of high pain patients and the rest of the group for the health belief subscale of disability (mean ± SD 2.0 ± 0.6 and 1.2 ± 0.7, respectively), and for the health belief subscale of harm (mean ± SD 2.7 ± 0.6 and 1.8 ± 0.7, respectively). Significant correlations were obtained between the pain measure and the pain‐coping subscale of catastrophizing, the pain belief subscales of disability, harm, solicitude (inverse), control, and medical cure.Conclusion
These results support a model of pain experience in patients with JIA where psychological factors are strongly influential. It may be efficient to focus behavioral interventions on a subgroup of children where the pain experience seems to be in discordance with the disease activity.8.
9.
10.
11.
G. Ted Brown F. Virginia Wright Bianca A. Lang Nina Birdi Kim Oen Derek Stephens Joan McComas Brian M. Feldman 《Arthritis care & research》2005,53(6):897-904
Objective
The Childhood Health Assessment Questionnaire (CHAQ), Juvenile Arthritis Functional Assessment Report (JAFAR), and Juvenile Arthritis Functional Status Index (JASI) are widely used functional measures for juvenile idiopathic arthritis (JIA) that differ in content, format, and completion time. We compared the responsiveness and child‐parent agreement of the JAFAR, CHAQ, and JASI in a prospective, multicenter study.Methods
Children and adolescents from 5 rheumatology centers were enrolled. Subjects were about to undergo therapy (intraarticular corticosteroid injections [IAS] and methotrexate or hip surgery (MTX/hip]) expected to produce a functional improvement. All subjects were studied before the intervention and at 6 weeks and 6 months posttreatment. At each study visit, the 3 measures were administered in randomized, balanced order to both parents and children.Results
A total of 92 subjects (mean age 12.8 years) were enrolled in the study, 74 of which were in the IAS group. The responsiveness of all 3 measures was moderate to strong. The standardized response mean at 6 weeks for the IAS group on the JAFAR, CHAQ, and JASI was 0.41 (95% confidence interval [95% CI] 0.18, 0.64), 0.70 (95% CI 0.47, 0.93), and 0.36 (95% CI 0.13, 0.59), respectively. The CHAQ was somewhat more responsive to change at 6 weeks (IAS group: relative efficiency 0.34 [JAFAR], 0.27 [JASI]), but less responsive at 6 months (MTX/hip group: relative efficiency 5.1 [JAFAR], 3.9 [JASI]). All 3 questionnaires showed acceptable parent‐child agreement, and overall, there were few differences between the 3 questionnaires.Conclusion
The functional outcome measures currently used for JIA are all adequately responsive for use in trials or in the clinic setting. The choice of which measure to use should therefore be based on the time available for completion, the intended clinical/research use, and the depth of content required.12.
Pulmonary function in children with juvenile idiopathic arthritis and effects of methotrexate therapy 总被引:2,自引:0,他引:2
Summary
Objective To evaluate impairment of lung function as an adverse effect associated with methotrexate therapy in patients with juvenile
idiopathic arthritis (JIA). Methods We performed pulmonary function testing including diffusion capacity for carbon monoxide as measured by the single breath
method (DLCO-SB) in 89 children with juvenile idiopathic arthritis. Forty (45%) were treated with methotrexate for a median
of 24 months (range 3 to 120 months). Except for the presence of asthma in two children, there was no clinical or radiological
evidence of pulmonary disease. Results Pulmonary function testing demonstrated moderate airway obstruction in two children with known bronchial asthma. Neither
obstructive nor restrictive alteration of ventilation was found in any other patient. Two juvenile idiopathic arthritis patients
showed a reduced CO diffusion capacity of 64 and 67%. One of them was treated with methotrexate. Conclusions With regard to lung function impairment treatment with low dose methotrexate appears to be safe even when performed for several
years reaching a total amount of up to 3.5 g. In contrast to studies performed in adult rheumatoid arthritis patients, in
children with juvenile idiopathic arthritis impairment of lung function is a rare event.
Received: 23 February 2001 Accepted: 16 May 2001 相似文献
13.
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14.
Etanercept—a recombinant TNF receptor fusion protein—has been approved for the treatment of resistant polyarticular juvenile
idiopathic arthritis. In children with JIA, 0.4 mg/kg is given subcutaneously twice weekly. In adult patients efficacy and
safety of etanercept, 25 mg twice weekly was comparable to 50 mg once weekly. In the German paediatric Etanercept registry
six patients with JIA were identified, who received Etanercept once weekly primarily and six patients who received Etanercept
initially twice weekly and later once weekly with increased dose per injection. In both groups, treatment was efficacious
and well tolerated. In patients switching from twice to once weekly administration, there was no loss of efficacy and no increase
in toxicity. At last observation 10/12 patients achieved an ACR-JRA 30 and 8/12 achieved an ACR-JRA70 response. These data
indicate that once weekly application of etanercept is safe and efficacous in children. 相似文献
15.
Hepsibai Joseph Ruma Nayak Mary Johnson Solomon Christopher Sathish Kumar 《Indian Journal of Rheumatology》2013,8(2):68-72
ObjectiveTo determine the quality of life and parental stress in children with juvenile idiopathic arthritis (JIA).MethodsPatients with juvenile idiopathic arthritis (JIA) and their parents were interviewed by a trained nurse in the clinic. Demographic data of parent's education, income, children disease subtype, medications and disease severity were collected. Quality of life was assessed by the Juvenile Arthritis Quality of Life Questionnaire (JAQQ) and parental stress was assessed by Pediatric Inventory for Parents (PIP).Results69 Consecutive children with JIA were recruited. Those children with Polyarticular JIA subtype and with deformity as JIA disease severity grade had poor QOL and those parents of children with Polyarticular subtype and with deformity had high parental stress. The was negative correlation between the QOL and parental stress (r = ?0.55; p = 0.003).ConclusionQuality of life in children with JIA depends on disease subtype and outcome. As the child's QOL decreases parental stress increases. Clinicians should adopt effective techniques to help parents understand their children's medical condition and support them. 相似文献
16.
In this study, we evaluate the distribution of nitric oxide (NO) in the serum of juvenile idiopathic arthritis (JIA) patients,
correlating it with parameters of the severity of the disease. Ninety-seven patients with mean age 11.7 years and disease
duration 4.8 years, showing active disease or not, grouped as oligoarticular (n = 34), polyarticular (n = 29) and systemic (n = 34) group, presenting uveitis and positive RF with erosive arthritis or active disease and erosions had significantly high
levels of NO than the inactive ones. NO correlated with TNF-α in the oligoarticular subtype (P < 0.03), with pain in the polyarticular subtype with active disease (P < 0.04) and with ESR in the systemic subtype with active disease (P < 0.03). TNF-α concentration was high in all patients with active disease, accompanying NO production. The data confirm the
production of NO in JIA patients, indicating a possible positive correlation between the production of NO and severity of
the disease. 相似文献
17.
The aim of the study was to assess the quality of life (QOL) and the psychological status of parents of children with juvenile
chronic arthritis (JCA). The QOL, anxiety and depression of the parents of 28 children with JCA were evaluated and compared
to those of the parents of 28 healthy children. Mothers of JCA children and mothers of healthy children reported similar QOL.
The reported anxiety and depression levels were similar for mothers and fathers in both groups. The parents of children with
pauciarticular-type JCA reported lower QOL and higher levels of anxiety and depression than the parents of children with other
types, namely polyarticular and systemic JCA. These findings may be explained by the fact that the pauciarticular patients
had shorter disease duration and were less frequently seen in the outpatient clinic. The QOL of mothers of children with JCA
was found to be slightly impaired in the group of children with pauciarticular JCA. Future larger studies are needed to confirm
these results, as the number of subjects in the three groups was rather low.
Received: 26 September 2001 / Accepted: 8 February 2002 相似文献
18.
《The Egyptian Rheumatologist》2020,42(3):231-236
BackgroundNew biologics developed to treat juvenile idiopathic arthritis (JIA) and the broadening range of indications for young children offer new drug switch options if the first-line treatment has proved ineffective. Nevertheless, the question regarding selection of the optimal medication depending on patients' characteristics and prior therapy still needs to be solved.Aim of the workTo evaluate the efficacy and safety of adalimumab (ADA) as the first and subsequent biologic drug in children under 4 years of age.Patients and methodsAnalysis was performed using the Research Center for Children’s Health registry data, including the prospective observational results involving children with JIA who had started ADA treatment between 2009 and 2012. Patients were allocated into the biologic-switcher (n = 8) and biologic-naïve (n = 17) groups according to prior treatment. The response to therapy was assessed using the ACR Pedi and the modified Wallace criteria.ResultsThe percentage of patients who had achieved ACR50/70/90 after 24-month therapy was 82.4/76.5/64.7% in the biologic-naïve and 62.5/50.0/37.5% in the biologic-switcher group. The percentages of patients who had achieved remission were comparable between the two groups (41.2 and 37.5%, respectively). 23 AEs occurred in 16 (64%) patients throughout the follow-up period. ADA was withdrawn from 6(24%) patients. One (5.9%) biologic-naïve patient and 2(25%) biologic-switchers discontinued treatment because of lack of efficacy.ConclusionsADA is efficacious and relatively safe in children younger than 4 years. However, ADA showed better efficacy in achieving ACR70/90 and maintaining the lowest disease activity at 24 months treatment in biologic-naïve patients. 相似文献
19.
《The Egyptian Rheumatologist》2022,44(3):251-255
Aim of the workTo assess the effect of vitamin D receptor (VDR) polymorphism on lipid profile in patients with juvenile idiopathic arthritis (JIA) and study its relation to disease characteristics.Patients and methodsThe study included 55 JIA children and 55 matched controls. The lipid profile including cholesterol, high and low-density lipoprotein (HDL and LDL), and triglycerides was assessed. The single nucleotide polymorphism (SNP) VDR gene (rs2228570) polymorphism was assayed by real-time polymerase chain reaction (PCR) in patients and control. Results:55 JIA patients were 36 girls and 19 boys (F:M 1.9:1) and with a mean of age 8.4 ± 3.1 years (3–13 years) and disease duration 1.8 ± 1.4 years (2 months ?8 years). Cholesterol, LDL, and triglycerides were significantly higher (175.4 ± 12.9 mg/dl vs 140.4 ± 7.3 mg/dl, 95.9 ± 9.3 mg/dl vs 71.4 ± 8.1 mg/dl, 95.4 ± 8.3 mg/dl vs 89.3 ± 9.1 mg/dl respectively) while the HDL was significantly lower (52.6 ± 4.5 mg/dl vs 54.9 ± 2.2 mg/dl)(p < 0.001) among JIA children as compared to control. The FF genotype was significantly more frequent in JIA (n = 35; 63.6%) than control(n = 19; 34.5%)(p < 0.001)(Odds ratio 3.3; CI 95% 1.5–7.2) while the Ff genotype was more in the control (n = 29; 52.7% vs n = 5; 9.1%)(p < 0.001). There were no significant variations in the lipid profile across VDR genotypes (p greater than 0.05).There was a significant association of FF genotype (n = 35; 100%) with the oligoarticular subtype of JIA and Ff (n = 3; 60%), ff (n = 9; 60%) with the polyarticular subtype of JIA (p < 0.001).ConclusionVDR FF genotype is associated with three folds risk for JIA and VDR polymorphism is not associated with dyslipidemia in JIA. 相似文献
20.
Hanaa S. El-Banna Doaa W. Nada Manal S. Hussein Shymaa A. Hablas Nivine F. Darwish Mohammed H. Abu-Zaid Suzan E. Gadou 《The Egyptian Rheumatologist》2019,41(2):151-155