Juvenile Arthritis Quality Of Life Questionnaire Research Articles

The Juvenile Arthritis Quality of Life Questionnaire in patients with juvenile idiopathic arthritis: Turkish version, validity, and reliability study.

This study aimed to assess the cultural adaptation, validity, and reliability of the Turkish version of the Juvenile Arthritis Quality of Life Questionnaire (JAQQ) in patients with juvenile idiopathic arthritis (JIA). A total of 100 JIA patients (64% female), aged 9 to 18years, participated in the study conducted at a tertiary care university hospital. The JAQQ was culturally adapted through a rigorous translation process and administered alongside established measures, including the Childhood Health Assessment Questionnaire (CHAQ), Juvenile Arthritis Biopsychosocial Questionnaire (JABQ), and Children's Depression Inventory (CDI). Validity and reliability were evaluated using Spearman's correlation coefficients, Cronbach's alpha, intraclass correlation coefficient (ICC), standard error of the mean (SEM), and minimal detectable change (MDC). The Turkish version of JAQQ exhibited high convergent validity, correlating significantly with CHAQ, JABQ, and CDI. No floor or ceiling effects were observed in the total JAQQ score, indicating a balanced assessment. Internal consistency was excellent (Cronbach's α = 0.948), and test-retest reliability was satisfactory (ICC = 0.913). SEM and MDC95 values were 0.357 and 0.99, respectively. The Turkish adaptation of JAQQ emerges as a valid and reliable instrument for comprehensively assessing the health-related quality of life in children and adolescents diagnosed with JIA. The questionnaire's robust psychometric properties, coupled with distinctive features like individualized assessment, highlight its potential as a valuable tool for both clinical assessment and scientific research in the field of pediatric rheumatology. Key Points • The Juvenile Arthritis Quality of Life Questionnaire (JAQQ) is an important scale that evaluates the quality of life of children with Juvenile Idiopathic Arthritis (JIA). • JAQQ is known and used in the field of pediatric rheumatology in Turkey, but its Turkish adaptation has not been made before. • Our study includes 100 JIA patients aged between 9 and 18 years and shows that the Turkish version of JAQQ is valid and reliable in measuring the quality of life of these children. • This research contributes to the accurate assessment of the quality of life in Turkish children diagnosed with JIA, providing valuable insights for both clinical and scientific studies.

E29 Juvenile Idiopathic Arthritis (JIA) in Algeria, from diagnosis to management

Abstract Introduction Juvenile idiopathic arthritis (JIA) is the most common chronic arthritis in children in the world. Objectives to describe a series of 120 children with juvenile idiopathic arthritis (JIA), diagnosed and recruited in the pediatric departments of 5 cities; Sétif and the cities surrounding: Bordj BouArreridj, M'sila, Béjaïa, Batna, between January 1st 2012 to December 31st, 2018 (seven years). The aim is to study the epidemiological, clinical, therapeutic, evolutionary, and the quality of life at presentation, 3rd, 6th and 12th month of follow-up of patients with JIA with evaluation of the incidence and prevalence rate. Materials and methods Our longitudinal, multicentre, and ambispective study (retrospective between 2012–2015, prospective between 2016–2018), allowed us to collect 120 newly diagnosed cases of JIA who fulfilled International League of Association for Rheumatology (ILAR) criteria. Patients were followed up for a duration of 12 months. Results 120 children were studied; females were predominant (54,2%). The average age at diagnosis was 7,46 ± 3,77 years with age at disease onset of ∼6,69 ± 3,65 years and a relatively diagnostic delay of 9,34 ± 13,05 months. Oligoarticular JIA was the most frequent (35,8%), persistent oligoarticular (32,5%) and extensive oligoarticular (3,3%).This is followed by polyarticular JIA (30,8%), Rheumatoid factor (RF) (25,8%) and with RF (5%), and systemic JIA (21,7%), 4.2% psoriatic arthritis (JPsA) and 2.5% enthesitis related arthritis (ERA) with 5% of uncategorized forms. Uveitis was present in 5.8% of cases. The initial inflammatory balance is disturbed with a erythrocyte sedimentation rate (ESR) of 56,32 ± 35,54 mm at the first h, and an average C-reactive protein (CRP) of 42,84 ± 53,76 mg/l, anaemia was seen in more than two thirds of the children (67,5%), thrombocytosis 35,8% and hyperleukocytosis in almost a quarter of children (22,5%). Antinuclear Antibodies (ANA) were present in a quarter of cases (25,8%), RF in 5%, and anti-cyclic citrullinated peptides (anti-CCP) in 3,3% of cases and Human Leucocyte Antigen B27 (HLA B27) was positive in 4.2% of children. An initial activity in non-systemic forms according to the Juvenile Arthritis Disease Activity Score (JADAS10) was moderate in more than a quarter of children, and a strong initial activity according to the American College of Rheumatology (ACR) in more than half of the systemic forms. A moderate initial average functional incapacity assessed by the Childhood Health Assessment Questionnaire (CHAQ) at 1,73 ± 0,52, a moderately altered initial average quality of life Juvenile Arthritis Quality of Life Questionnaire (JAQQ) at 4,07 ± 1,12 and a pain-physician Visual Analogue Scale (VAS) initial mean at 4,98 ± 1,74. The mean annual incidence rate in Sétif during the prospective study was 3,88/100 000 children under 16 and those of the Eastern region including Sétif and the surrounding wilayas (BBA, M'sila, Béjaïa, and Batna) is 2 per 100 000 children under 16. The rate of prevalence of JIA in Sétif is 11,25/100 000 children under 16, and in the East region of the study was 5,80/100 000 children under the age of 16. Medications used were non-steroidal anti-inflammatory drugs (NSAIDs) in (83.3%) followed by disease-modifying antirheumatic drugs (DMARDs) in 65%. Methotrexate in (63,3%), glucocorticoids in (49,2%), and aspirin used in 16,7%, intra-articular corticosteroid injections (IACs) in (15.8%), biotherapy in (19,1%). 27,5% had functional rehabilitation. Evolution at one year is marked by 44.5% disease inactivity with treatment and 31,1% remission. Conclusion JIA is the most common chronic rheumatic disease in children. Nevertheless, it is considered a rare but not exceptional pathology. It is one of the main causes of short-, medium- and long-term disability. Ethics Associate Professor of pediatrics, department of medicine University Setif-Algeria (pediatric center –Setif-Algeria)

Worse Quality of Life, Function, and Pain in Children With Enthesitis, Irrespective of Their Juvenile Arthritis Category.

To estimate the impact of enthesitis on patient-reported outcomes in children with juvenile idiopathic arthritis (JIA), irrespective of JIA category. Children enrolled in the Research in Arthritis in Canadian Children Emphasizing Outcomes cohort were studied. Entheseal tenderness by physician examination in 33 defined locations, Juvenile Arthritis Quality of Life Questionnaire (JAQQ), Quality of My Life (QoML) Questionnaire, Childhood Health Assessment Questionnaire (C-HAQ), and a pain visual analog scale were completed at enrollment, every 6 months for 2 years, and then yearly up to 5 years. Analyses consisted of descriptive statistics, linear mixed models for longitudinal data, and analysis of covariance. Among 1,371 patients followed for a median of 35.3 months (interquartile range 22.1, 49.2), 214 (16%) had enthesitis, of whom 137 (64%) were classified as having enthesitis-related arthritis. After adjusting for JIA category and covariates, children with enthesitis reported higher JAQQ (mean raw score 2.71 versus 2.16, adjusted difference 0.41 points; 95% confidence interval [95% CI] 0.22, 0.59), higher C-HAQ (0.47 versus 0.31, adjusted difference 0.14 points; 95% CI 0.07, 0.22), higher pain (3.01 versus 1.68, adjusted difference 0.94 points; 95% CI 0.64, 1.25), and lower QoML (7.02 versus 8.23, adjusted difference -0.80 points; 95% CI -1.09, -0.51) scores than children without enthesitis. These differences persisted up to 5 years. Children with enthesitis, regardless of JIA category, report worse patient-reported outcomes than those without enthesitis. Thus, enthesitis should be assessed in all children with JIA.

A21: Physical Activity in Children with Juvenile Idiopathic Arthritis (JIA): The LEAP (Linking Exercise, Activity, and Pathophysiology in Childhood Arthritis) Study

Background/Purpose:Although children with JIA have lower fitness levels than healthy peers, little is known about their level of habitual physical activity. The LEAP study is a prospective longitudinal multicentre study of children and teens with JIA, aimed at describing the trajectory of physical activity (PA) in JIA, and its relationship to disease factors, inflammation, quality of life, bone health and muscle function. We report PA levels of children with JIA in early and late disease at study entry.Methods:We enrolled patients with JIA (aged 8–16 y) at 12 pediatric rheumatology centres in Canada as either an inception cohort (early disease; within 6 mos of diagnosis) or an established disease cohort (late disease; > 2yr after diagnosis). We assessed PA with a validated Physical Activity Questionnaire for children (PAQ‐C, age 8–13 y) or teens (PAQ‐A, age 14–16 y). This 7‐day recall self‐report tool has scores from 0 (no PA)‐ 5(high PA). Participants record weekly PA across a wide range of activities and sports. Patients completed a pain scale (VAS 0–100), the Childhood Health Assessment Questionnaire (CHAQ), and Juvenile Arthritis Quality of life Questionnaire (JAQQ). Examining physicians recorded physician global assessment of disease activity (PGA;VAS 0–100) and active joint count. We used univariate and multivariate regression (controlled for gender) to examine relationships between disease and patient factors and PAQ score at study entry. We used PAQ standard population normative values to compare to subjects (female 2.69, SD 0.62; male 3.0 SD 0.72).Results:We included the first 189 patients enrolled (126 F, 63 M, med age 13 y) from March 2012–November 2013. The early cohort included 81 patients (enrolled median 2.4 mo after diagnosis) and the late cohort included 108 patients (enrolled median 4.8 yr after diagnosis). Active arthritis was found in 88 patients, with a mean of 5.5 active joints (range 1–56). PGA was a mean of 13.45 (range 0–74). Overall mean PAQ score for the JIA patients was 2.55 (SD 0.73, range 1–4). Table describes PAQ scores by sex, disease cohort, and presence of active arthritis. When controlled for sex, PAQ scores were significantly different between new onset and late disease, and between patients with active arthritis compared with no active arthritis. Univariate analyses revealed that higher PAQ score were associated with lower pain (p = 0.02), lower CHAQ score (p < 0.0001), higher JAQQ score (p = 0.0001), lower active joints (p = 0.002) and low PGA (p = 0.003). Multivariate analysis confirmed these associations, with R2 = 0.25, p = 0.000 (girls), R2 = 0.17, p = 0.01 (boys). PAQ scores in patients with JIA Total Female (mean, SD) Female z‐score (mean, SD) Male (mean, SD) Male z‐score (mean, SD) Total 2.5 (0.73) 2.43 (0.66) −0.40 (1.05) 2.77 (0.81) −0.31(1.13) Early disease 2.42 (0.77) 2.29 (0.66) −0.63 (1.05) 2.59 (0.9) −0.44 (1.3) Late disease 2.65 (0.68) 2.53 (0.64) −0.4 (1.04) 2.94 (0.68) −0.07 (0.94) Active joints present 2.36 (0.76) 2.13 (0.59) −0.88 (0.94) 2.77 (0.85) −0.2 (0.85) No active joints 2.71 (0.67) 2.66 (0.6) −0.04 (0.95) 2.77 (0.78) −0.31 (0.78)Conclusion:Children with JIA report significantly lower levels of PA than healthy peers; this was evident in girls, patients with active arthritis, and in early disease. Disease activity, pain, self reported quality of life and functional status may play a role in moderating PA in JIA.

Quality of life of children with juvenile idiopathic arthritis and its relationship with parental stress

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.

Predictors of 2 year outcomes of juvenile idiopathic arthritis in a multicenter Canadian cohort: the ReACCh out experience

Purpose The ability to predict which children with Juvenile idiopathic Arthritis (JIA) are likely to have worse outcomes would allow a more targeted aggressive approach to initial therapy. We used data from the Research on Arthritis in Canadian Children Emphasizing Outcomes (ReACCh Out), a 16-centre prospective inception cohort of children with newly diagnosed JIA, to identify predictors of 2-year outcomes present during the first 6 months after enrollment. Methods Data was available on 223 to 291 children depending on the analysis. The 2-year clinical outcomes were remission, a Childhood Health Assessment questionnaire (CHAQ) score of ≥0.75, and the Juvenile Arthritis Quality of Life Questionnaire (JAQQ) score. Remission was defined according to Wallace criteria (without ESR or CRP), and combined patients on and off medication. The candidate predictors listed in Table 1 were selected for their clinical relevance and forced in a stepwise manner into regression models. They underwent natural logarithmic transformation (Ln) if not normally distributed. Logistic regression was used for prediction of remission and CHAQ outcomes, and linear regression for the JAQQ score.

Two year remission rates and functional outcomes in an inception cohort of Canadian children with juvenile idiopathic arthritis

Purpose To examine the remission rates and functional outcomes in an inception cohort of patients with juvenile idiopathic arthritis (JIA). Methods The Research in Arthritis in Canadian Children, emphasizing Outcomes (ReACCh-Out) cohort is a 16-centre inception cohort of patients with JIA enrolled within 1 year of diagnosis. All patients who completed 5 sixmonthly study visits from baseline to 24 months were included in this analysis. Disease activity and functional measures were collected at each visit. Criteria for disease remission status in this study were defined by Wallace et al (2006) modified by omission of ESR or CRP due to incomplete data. Inactive disease (ID) was defined as no active joints, physician global assessment 0, and no active extra-articular disease; clinical remission on medications (CRM) is ID for ≥ 6 months on medications; and clinical remission (CR) is ID for ≥ 12 months off medications. Health status was measured using the Juvenile Arthritis Quality of Life Questionnaire (JAQQ), and functional status using the Child Health Assessment Questionnaire (CHAQ). Results

Measures of health status and quality of life in juvenile rheumatoid arthritis: Pediatric Quality of Life Inventory (PedsQL) Rheumatology Module 3.0, Juvenile Arthritis Quality of Life Questionnaire (JAQQ), Paediatric Rheumatology Quality of Life Scale (PRQL), and Childhood Arthritis Health Profile (CAHP)

Pediatric researchers and clinicians increasingly recognize the importance of measuring the impact of childhood disease across many aspects of a child’s life. In this review, we describe four measures of health related quality of life (HRQOL) designed specifically for children with Juvenile Idiopathic Arthritis (JIA). HRQOL generally refers to how an individual feels about aspects of their life in relation to their health. The World Health Organization originally described HRQOL as minimally including: physical, mental, and social health dimensions.1 Subsequent HRQOL definitions, while varied, have incorporated the notion that individuals have an important and distinct viewpoint regarding their disease and the quality of their life.2 They have also often emphasized HRQOL’s subjective nature.2 These features present unique challenges when measuring HRQOL in children. Cognizant of these issues, we review the development and psychometric properties of the Pediatric Quality of Life Inventory (PedsQL) Rheumatology Module 3.0, the Juvenile Arthritis Quality of Life Questionnaire (JAQQ), the Paediatric Rheumatology Quality of Life Scale (PRQL), and the Childhood Arthritis Health Profile (CAHP).

Quality of Life Issues in Pediatric Immune-Mediated Inflammatory Disease

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.

Predictors of early inactive disease in a juvenile idiopathic arthritis cohort: Results of a Canadian multicenter, prospective inception cohort study

To determine early predictors of 6-month outcomes in a prospective cohort of patients with juvenile idiopathic arthritis (JIA). 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. 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. 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.

Is parental coping associated with quality of life in juvenile idiopathic arthritis?

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 (β 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.

Health related quality of life survey about children and adolescents with juvenile idiopathic arthritis

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.

The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis

There is an extensive evidence base for the need of transitional care, but a paucity of robust outcome data. The aim of the study was to determine whether the quality of life of adolescents with juvenile idiopathic arthritis (JIA) could be improved by a co-ordinated, evidence-based programme of transitional care. Adolescents with JIA aged 11, 14 and 17 yrs and their parents were recruited from 10 rheumatology centres in the UK. Data were collected at baseline, 6 and 12 months including core outcome variables. The primary outcome measure was health-related quality of life (HRQL): Juvenile Arthritis Quality of Life Questionnaire (JAQQ). Secondary outcome measures included: knowledge, satisfaction, independent health behaviours and pre-vocational experience. Of the 359 families invited to participate, 308 (86%) adolescents and 303 (84%) parents accepted. A fifth of them had persistent oligoarthritis. Median disease duration was 5.7 (0-16) yrs. Compared with baseline values, significant improvements in JAQQ scores were reported for adolescent and parent ratings at 6 and 12 months and for most secondary outcome measures with no significant deteriorations between 6 and 12 months. Continuous improvement was observed for both adolescent and parent knowledge with significantly greater improvement in the younger age groups at 12 months (P = 0.002). This study represents the first objective evaluation of an evidence-based transitional care programme and demonstrates that such care can potentially improve adolescents' HRQL.

Comparison between Children with Juvenile Idiopathic Arthritis (JIA) and their Parents Concerning Perceived Quality of Life

The aim of the study was to determine the level of agreement between the perceptions of children with JIA and their parents concerning quality of life. Fifty patients aged 9-18 years and their parents, who attended the JIA clinic at the Montreal Children's Hospital, completed the Juvenile Arthritis Quality of Life Questionnaire (JAQQ). Paired t-tests were employed to compare parents' and children's scores and agreements were analyzed by intraclass correlation coefficients (ICCs). Linear regression was used to explore factors associated with agreements and with the perceptions of quality of life. ICCs (95% confidence interval) for the subscales of the JAQQ were 0.62 (0.42,0.77) for gross motor function, 0.35 (0.08,0.57) for fine motor function, 0.61 (0.41,0.76) for psychosocial function, 0.70 (0.52,0.82) for systemic symptoms and 0.60 (0.38,0.75) for pain. Agreement was higher for psychosocial function among younger children and for overall quality of life among those who had the disease longer. Higher agreement levels on pain were associated with more severe disease. Disease severity was associated with perceptions of quality of life (p < 0.01). There seems to be good agreement between the perceptions of children with JIA and their parents concerning quality of life, except for fine motor function.

Health‐related quality of life in adolescents with juvenile idiopathic arthritis

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. 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. 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. 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.

A study compared nine patient-specific indices for musculoskeletal disorders

Background and Objective Patient-specific quality of life indices show great potential, but certain conceptual and methodological concerns have yet to be fully addressed. The present study reviewed nine patient-specific instruments used in musculoskeletal disorders: the Canadian Occupational Performance Measure (COPM), Juvenile Arthritis Quality of life Questionnaire (JAQQ), McMaster–Toronto Arthritis questionnaire (MACTAR), Measure Yourself Medical Outcome Profile (MYMOP), Patient-Specific Index (PASI) for total hip arthroplasty, Problem Elicitation Technique (PET), Patient Generated Index (PGI) of quality of life, Patient-Specific Functional Scale (PSFS), and Schedule for the Evaluation of Individual Quality of Life (SEIQoL). Study Design and Setting Each tool was evaluated for purpose, content validity, face validity, feasibility, psychometric properties, and responsiveness. Results This critical appraisal revealed important differences in terms of the concept underlying these indices, the domains covered, the item-generation techniques and the scoring (response scale, methods) in each scale. The nine indices would generate different responses and likely scores for the same patient, despite the fact that they all include patient-generated items. Conclusion Although the value of these indices in treatment planning and monitoring at an individual level is strong, more studies are needed to improve our understanding of how to interpret the numeric scores of patient-specific indices at both an individual and a group level.

Health of children with chronic arthritis: relationship of different measures and the quality of parent proxy reporting.

To examine the strength of the association between different measures of health-related quality of life (HRQOL), disability, pain, and well-being in children with chronic arthritis. To evaluate whether HRQOL scores vary as a function of disability status beyond chance. To assess the quality of the parent proxy report for HRQOL as compared with disability, pain, and well-being. Measures of HRQOL (visual analog scale [VAS] of health, Pediatric Quality of Life Inventory [PedsQL], Juvenile Arthritis Quality of Life Questionnaire (JAQQ), and modified standard gamble technique [SG]), disability (Childhood Health Assessment Questionnaire), VAS of pain, and VAS of well-being (VAS-well) were completed by the parents (n = 119) and patients > or =8 years (SG: > or =12 years). HRQOL was highest when measured by the SG, whose utilities were no more than weakly correlated with any of the other outcomes. The values of all other HRQOL measures were at least moderately correlated with each other and with the VAS-well. Irrespective of the measure used, disability was associated with significantly decreased HRQOL. There was fair to good agreement and moderate consistency of the HRQOL ratings (SG: fair consistency) between patients and parents with marked differences between health domains. HRQOL measured by the PedsQL, JAQQ, and VAS are moderately to highly correlated with each other in children with chronic arthritis. The children's HRQOL significantly decreases with increasing disability. Despite more pronounced differences for some health domains, parents are moderate to good proxy reporters of HRQOL, disability, and well-being of children with chronic arthritis.

Pediatric measures of quality of life: The Juvenile Arthritis Quality of Life Questionnaire (JAQQ) and the Pediatric Quality of Life (PedsQL)

Pediatric measures of quality of life: The Juvenile Arthritis Quality of Life Questionnaire (JAQQ) and the Pediatric Quality of Life (PedsQL)

Health assessment in the rheumatic diseases of childhood.

Assessment of children and adults with rheumatic diseases, both in clinical practice and controlled clinical trials in rheumatology, has traditionally focused on the measurement of disease activity. More recently emphasis has been placed on the need to incorporate estimates of physical, social, and mental functioning into health assessment. Thus there has been a tremendous growth in the development of measurement instruments that evaluate health status, functional status, disability, and quality of life. This type of measurement has become essential, particularly for clinical trials in adults with rheumatic diseases, for which the AIMS (Arthritis Impact Measurement Scales), the HAQ (Health Assessment Questionnaire), and the MACTAR (McMaster-Toronto arthritis) patient preference questionnaire have been the most widely used. In the past few years, similar measures have been developed for application in children with rheumatic diseases. These include the CHAIMS (Childhood Arthritis Impact Measurement Scales), the CHAQ (Childhood Health Assessment Questionnaire), the JAFAR (Juvenile Arthritis Functional Assessment Report), the JASI (Juvenile Arthritis Self-report Index), the JAQQ (Juvenile Arthritis Quality of Life Questionnaire), and the CAHP (Childhood Arthritis Health Profile). In this review, the development and measurement properties of these childhood instruments are discussed, with particular emphasis on their potential roles as supported by recent literature.