Proxy‐reported health‐related quality of life of patients with juvenile idiopathic arthritis: The pediatric rheumatology international trials organization multinational quality of life cohort study

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.     

Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study

OBJECTIVES: To compare health-related quality of life (HRQL) and to identify clinical determinants for poor HRQL of patients with juvenile idiopathic arthritis (JIA) coming from three geographic areas. METHODS: The HRQL was assessed through the Child Health Questionnaire (CHQ). A total of 30 countries were included grouped in three geographic areas: 16 countries in Western Europe; 10 in Eastern Europe; and four in Latin America. Potential determinants of poor HRQL included demographic data, physician's and parent's global assessments, measures of joint inflammation, disability as measured by Childhood Health Assessment Questionnaire (CHAQ) and erythrocyte sedimentation rate. Poor HRQL was defined as a CHQ physical summary score (PhS) or psychosocial summary score (PsS) <2 S.D. from that of healthy children. RESULTS: A total of 3167 patients with JIA, younger than 18 yrs, were included in this study. The most affected health concepts (<2 S.D. from healthy children) that differentiate the three geographic areas include physical functioning, bodily pain/discomfort, global health, general health perception, change in health with respect to the previous year, self-esteem and family cohesion. Determinants for poor HRQL were similar across geographic areas with physical well-being mostly affected by the level of disability while the psychosocial well-being by the intensity of pain. CONCLUSION: We found that patients with JIA have a significant impairment of their HRQL compared with healthy peers, particularly in the physical domain. Disability and pain are the most important determinants of physical and psychosocial well-being irrespective of the geographic area of origin.     

Measuring health status in early juvenile idiopathic arthritis: determinants and responsiveness of the child health questionnaire

OBJECTIVE: To assess the determinants and responsiveness of the Norwegian version of the Child Health Questionnaire (CHQ) in patients with early juvenile idiopathic arthritis (JIA) and to compare health status in patients and controls. METHODS: A total of 116 children (median age 8.4 yrs) with JIA and < 2.5 years of disease duration (median 11.0 mo) were examined by a pediatric rheumatologist and reassessed after a median of 10.0 months. Physical and psychosocial health were assessed by means of the CHQ, which provides summary scores for physical and psychosocial health, the Childhood Health Assessment Questionnaire (CHAQ), and the Child Behavior Checklist (CBCL, n = 32). Matched controls (n = 116), randomly selected from the general population, completed the CHQ at baseline. RESULTS: The patients with JIA had poorer physical health and slightly impaired psychosocial health compared with the controls [41.2 +/- 13.6 vs 55.2 +/- 7.3 (p < 0.001) and 51.0 +/- 7.5 vs 54.1 +/- 5.7 (p = 0.002), respectively]. The most important determinants of the CHQ physical summary score were the child's pain, morning stiffness, the CHAQ disability index, erythrocyte sedimentation rate (ESR), overall well-being, and physician's global assessment of disease activity. The psychosocial summary score correlated with the CBCL level of internalizing, externalizing, and total behavior problems. The standardized response mean for the physical summary score was large (0.96) for those who improved, and moderate (-0.60) for those who became worse. CONCLUSION: The CHQ discriminated between patients with early JIA and controls. The most important determinants of the CHQ physical summary score were the child's pain, morning stiffness, CHAQ, ESR, overall well-being, and physician's global assessment of disease activity. The CHQ was sensitive to clinical changes in children with JIA.     

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.     

Relative responsiveness of condition specific and generic health status measures in juvenile idiopathic arthritis

OBJECTIVES: To compare the relative responsiveness of condition specific measures with that of a generic health status instrument for outcome assessment of intra-articular corticosteroid (IAC) injection in patients with juvenile idiopathic arthritis (JIA). METHODS: We examined 44 consecutive patients with oligoarticular JIA before an IAC injection and after 6 months. Condition specific measures included physician's and parent's global assessments, the Childhood Health Assessment Questionnaire (CHAQ), the articular indices, and laboratory indicators of systemic inflammation. The generic health status instrument was the Child Health Questionnaire (CHQ), which was divided into two parts: the physical score (PhS) and the psychosocial score (PsS). Responsiveness statistics were the standardised response mean, the effect size, and Guyatt's method. The discriminative ability of the clinical measures in distinguishing improved from non-improved patients was evaluated with the correlation and the receiver operating characteristic methods, using the physician's and the parent's judgements of the treatment outcome as external criteria. RESULTS: All responsiveness statistics and discriminative ability assessments consistently ranked the physician's global assessment of the disease activity as the most responsive measure. The CHQ-PhS revealed superior ability in detecting baseline versus 6 month change compared with the CHAQ and the CHQ-PsS; both summary scales of the CHQ revealed better discriminative ability than the CHAQ. CONCLUSIONS: The physician's global assessment of the disease activity proved the most responsive outcome measure in our patients with JIA. The relative evaluative properties of the generic health status instrument and the CHAQ should be further investigated.     

Health‐related quality of life of patients with juvenile dermatomyositis: Results from the paediatric rheumatology international trials organisation multinational quality of life cohort study

Objective

To investigate the health‐related quality of life (HRQOL) change over time, as measured by the Child Health Questionnaire (CHQ), and its determinants in patients with active juvenile dermatomyositis (DM).

Methods

We assessed patients with juvenile DM at both baseline and 6 months of followup, and healthy children age ≤18 years. Potential determinants of poor HRQOL included demographic data, physician's and parent's global assessments, muscle strength, functional ability as measured by the Childhood Health Assessment Questionnaire (C‐HAQ), global disease activity assessments, and laboratory markers.

Results

A total of 272 children with juvenile DM and 2,288 healthy children were enrolled from 37 countries. The mean ± SD CHQ physical and psychosocial summary scores were significantly lower in children with juvenile DM (33.7 ± 11.7 versus 54.6 ± 4.1) than in healthy children (45.1 ± 9.0 versus 52 ± 7.2), with physical well‐being domains being the most impaired. HRQOL improved over time in responders to treatment and remained unchanged or worsened in nonresponders. Both physical and psychosocial summary scores decreased with increasing levels of disease activity, muscle strength, and parent's evaluation of the child's overall well‐being. A C‐HAQ score >1.6 (odds ratio [OR] 5.06, 95% confidence interval [95% CI] 2.03–12.59), child's overall well‐being score >6.2 (OR 5.24, 95% CI 2.27–12.10), and to a lesser extent muscle strength and alanine aminotransferase level were the strongest determinants of poor physical well‐being at baseline. Baseline disability and longer disease duration were the major determinants for poor physical well‐being at followup.

Conclusion

We found that patients with juvenile DM have a significant impairment in their HRQOL compared with healthy peers, particularly in the physical domain. Physical well‐being was mostly affected by the level of functional impairment.     

Health-related quality of life in juvenile-onset systemic lupus erythematosus and its relationship to disease activity and damage

OBJECTIVE: To assess the health-related quality of life (HRQL) of patients with juvenile-onset systemic lupus erythematosus (JSLE) and its relationship with disease activity and accumulated damage. METHODS: In this cross-sectional study, HRQL was assessed using the Child Health Questionnaire (CHQ), disease activity using the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI), and accumulated damage using the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI). RESULTS: A total of 297 patients were included. The mean +/- SD physical and psychosocial summary scores of the CHQ were 40.2 +/- 15.0 and 44.8 +/- 10.7, respectively. The most impaired CHQ subscales were global health, general health perceptions, and parent impact-emotional. The SLEDAI score was significantly correlated with both the physical summary score (r = -0.29, P < 0.0001) and psychosocial summary score (r = -0.25, P < 0.0001), whereas the SDI score was significantly correlated only with the physical summary score (r = -0.23, P = 0.0001). CONCLUSION: We found that patients with JSLE have significant impairment of their HRQL, particularly in the physical domain. HRQL may be affected by both disease activity and accumulated damage, particularly in the renal, central nervous, and musculoskeletal systems.     

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

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.     

Determinants of health-related quality of life impairment in Egyptian children and adolescents with juvenile idiopathic arthritis: Sharkia Governorate

The aim of this study was to identify the possible determinants of impaired health-related quality of life (HRQOL) in Egyptian children and adolescents with juvenile idiopathic arthritis (JIA). Fifty-eight consecutive patients of JIA aged from 8 to 18 years underwent assessment of socio-economic and demographic characteristics; HRQOL using Pediatric Quality of Life Inventory 4.0 Generic Core Scale, disease activity using the Juvenile Arthritis Disease Activity Score based on 27 joints (JADAS-27), functional ability using the childhood health assessment questionnaire (CHAQ), pain score on visual analog scale and psychological symptoms using the Children’s Depression Inventory (CDI) score. Multivariate modeling was applied to determine the factors that associated with HRQOL impairment. A total of 55 % of the patients (32 of 58) had impaired HRQOL (<78.6). In multiple regression analyses, high CHAQ scores (OR 6.0, 95 % CI 2.0–17.5, P = 0.001), pain (OR 3.1, 95 % CI 1.9–6.3, P = 0.01), stop going to school (OR 3.9, 95 % CI 2.0–7.3, P = 0.01), low socioeconomic status (OR 2.3, 95 % CI 1.09–4.7, P = 0.04) and high psychological symptoms (OR 4.2, 95 % CI 2.0–12.6, P = 0.001) were determinants for HRQOL impairment. HRQOL impairment is a significant problem in Egyptian children and adolescents with JIA. These findings underscore the critical need for monitoring of HRQOL in these patients. More attention should be given to JIA patients who stop going to school and who has low socioeconomic status.     

The physiological and physical determinants of functional ability measures in children with juvenile dermatomyositis

OBJECTIVE: To study the relationships of muscle strength and maximal oxygen consumption (VO(2peak)) with Childhood Health Assessment Questionnaire (CHAQ) score, Childhood Myositis Assessment Score (CMAS) and Child Health Questionnaire [physical summary (CHQ-PhS) and psychosocial summary (CHQ-PsS)] scores in juvenile dermatomyositis. METHOD: Fifteen patients (age 5-14 yr) participated. CMAS, CHAQ, CHQ, muscle strength and VO(2peak) were measured. RESULTS: Correlations revealed significant relationships between CHAQ and (i) muscle strength (r=-0.72) and (ii) absolute VO(2peak) (r=-0.68); between CMAS and relative VO(2peak) (r=0.73); and between CHQ-PhS and (i) muscle strength (r=0.57) and (ii) relative VO(2peak) (r=0.58). Backward regression analysis showed that muscle strength was the best indicator of variation in CHAQ. Age and relative VO(2peak) were the best indicators for CMAS. Body mass and age were the best indicators for CHQ-PsS. Body mass and muscle strength were the best indicators for CHQ-PhS. CONCLUSION: CMAS, CHAQ and CHQ correlate with muscle strength and VO(2peak). CMAS, CHAQ and CHQ depend on different physical and physiological variables.     

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

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.

     

Functional ability and physical and psychosocial well-being of hypermobile schoolchildren

OBJECTIVE: To compare the functional ability and the physical and psychosocial well-being of children with joint hypermobility to those of age- and sex-matched non-hypermobile subjects. METHODS: 311 healthy Italian schoolchildren aged 6.3 to 19.3 years were examined for hypermobility of the joints. Functional ability was assessed through the Childhood Health Assessment Questionnaire (CHAQ) and the physical and psychosocial well-being through the Childhood Health Questionnaire (CHQ). The parent's assessment of the child's overall well-being and of the child's pain was measured on a visual analogue scale. RESULTS: The overall prevalence of articular hypermobility was 34% (106/311), with the median hypermobility score being 3 (interquartile range 1, 5). Although the hypermobility score of girls (median 3: interquartile range 2, 5) exceeded that of boys (median 2.5; interquartile range 0, 5), this difference was not statistically significant (p = 0.16). The level of hypermobile children's pain in the preceding weeks, as assessed by the parents, was comparable to that recorded in the non-hypermobile peers. There was a weak negative correlation between the hypermobility score and the age of the child (r = -0.14, p=0.01). All instrument scores were comparable between hypermobile and non-hypermobile subjects, with the sole exception of a borderline significant greater impairment of the Role/social limitations-physical subscale of the CHQ in the hypermobile group. The hypermobility score was not correlated with any instrument score. CONCLUSIONS: The presence of joint hypermobility does not affect the functional ability and the physical and psychosocial well being of otherwise healthy children. These results suggest that the physical functioning in everyday life and the general health status of hypermobile children are not impaired.     

Cross-cultural adaptation and validation of the Japanese version of the Childhood Health Assessment Questionnaire (CHAQ)

To assess cross-cultural adaptation, and to validate the parent's version of a health-related quality-of-life instrument, the Childhood Health Assessment Questionnaire (CHAQ) was investigated after its translation into Japanese. A total of 132 subjects were enrolled: 63 patients with juvenile idiopathic arthritis (JIA) (34 systemic and 29 polyarticular) and 69 healthy children. The CHAQ distinguished clinically between healthy subjects and the two JIA subtypes of patients. The average disability index (DI) scores for systemic JIA (sJIA) and polyarticular JIA (pJIA) patients and healthy subjects were 1.5, 1.2, and 0.0, respectively. All variables in the questionnaire were shown to be significant (P < 0.001). Patients with pJIA showed better correlation than those with sJIA. Significant correlation was seen in the polyarticular group with CRP, ESR, parents' VAS, the number of joints with pain, and the number of active joints. However, there was even a negative correlation between DI and parent's assessment of overall well-being for the sJIA group. The Japanese version of the CHAQ was a reliable and valid tool for the functional assessment of children with pJIA. Functional ability, as assessed by the CHAQ, may not be the main consideration of sJIA patients' parents when assessing their child's status.     

Abatacept improves health‐related quality of life,pain, sleep quality,and daily participation in subjects with juvenile idiopathic arthritis

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.

     

Early disease course and predictors of disability in juvenile rheumatoid arthritis and juvenile spondyloarthropathy: a 3 year prospective study

OBJECTIVE:. To describe the 3 year disease course in early juvenile rheumatoid arthritis (JRA) and juvenile spondyloarthropathy (JSpA), to compare the health status after 3 years of followup with that of normal controls, and to investigate the relationship between physical function at followup and disease characteristics recorded during the first 6 months. METHODS: One hundred and ninety-seven children (median age 6:6 yrs) with JRA and JSpA and disease duration <1.5 years were examined by a pediatric rheumatologist every 6 months for a median of 3.1 years. Controls were randomly selected from the National Population Register. Physical and psychosocial health was assessed by means of the Child Health Questionnaire and the Childhood Health Assessment Questionnaire (CHAQ). Disease course was analyzed by analysis of variance for repeated measurements. RESULTS: Health status and disease activity improved over time. Treatment with disease modifying antirheumatic drugs was started in 58% of the patients at baseline. Patients with persistent oligoarthritis had the most favorable disease course. The patients with juvenile ankylosing spondylitis (JAS), syndrome of seronegative enthesopathy and arthropathy (SEA), and rheumatoid factor (RF) positive polyarthritis had the poorest health status. A significant improvement for the whole group was observed after 3 years in all measures of disease activity and health status, except pain. Patients had poorer physical function and general health and more pain than controls. Predictors of reduced physical function at followup were a high CHAQ disability index and a poor well-being assessed during the first 6 months. CONCLUSION: Health status and disease activity improved over time in patients under medical treatment. The patients with JAS/SEA and RF positive polyarthritis had poorer health than the patients in other subtypes. A high disability index and a poor well-being at baseline predicted reduced physical function after 3 years.     

Development and evaluation of a single value score to assess global range of motion in juvenile idiopathic arthritis

OBJECTIVES: To develop a global range of motion score (GROMS) and to investigate the association between this newly developed measure of joint range of motion and physical function in children with active juvenile idiopathic arthritis (JIA). METHODS: Two scales were calculated, 1 measuring 56 selected joints and 1 measuring 10 joints assessed as important to function by experts from the British Paediatric Rheumatology Group. These were measured in 50 patients with JIA whose disability was assessed using the Child Health Assessment Questionnaire (CHAQ). RESULTS: The GROMS measuring all joints and the GROMS measuring 10 joints closely agreed with each other, and both GROMS correlated significantly with the CHAQ (r = -0.52 and -0.62, respectively). CONCLUSION: The 10-joint GROMS is a simple, easy-to-use tool that measures overall change in joint range of motion that affects physical function in JIA.     

Discordance between proxy-reported and observed assessment of functional ability of children with juvenile idiopathic arthritis

OBJECTIVE: To determine the level of agreement between parents and clinicians in rating dysfunction in children with juvenile idiopathic arthritis (JIA). METHODS: A parent of each patient completed the Italian version of the Childhood Health Assessment Questionnaire (CHAQ). Subsequently, an examiner assessed, in a specially equipped room, the child's performance of tasks as described by the CHAQ. Demographic and clinical variables were recorded for all patients. RESULTS: Seventy consecutive JIA patients and their parents were included. The mean proxy-reported and observed CHAQ score was 0.64+/-0.53 and 0.47+/-0.62 respectively, the difference ranging from -1.75 to 1.5. There were 30 cases (43%) of agreement (difference < or =0.25 CHAQ units) between the parent's and clinician's ratings, whereas in 40 cases (57%) there was discordance (difference >0.25 CHAQ units). In 30 cases the parent rated the child's functional ability as worse than that observed by the clinician (i.e. the parent underestimated the child's function), whereas in 10 cases the parent rated the child's functional ability as better than that observed by the clinician (i.e. overestimated the child's function). Multivariate regression analysis showed that children's functional ability was overestimated by parents with increasing erythrocyte sedimentation rate and global articular severity score and underestimated with increasing level of pain. Among the functional areas of the CHAQ, the level of agreement was poorest in the areas of eating and hygiene and was best for activities. CONCLUSIONS: Discordance between proxy-reported and observed functional ability was frequent in our patients with JIA. The children's functional ability was overestimated by parents as the severity of arthritis increased and underestimated as the level of pain increased.     

Validity of the childhood health assessment questionnaire is independent of age in juvenile idiopathic arthritis

OBJECTIVE: To determine whether the Childhood Health Assessment Questionnaire (CHAQ) is valid for the comparison of different age subgroups and for longitudinal studies in juvenile idiopathic arthritis (JIA). METHODS: A CHAQ was administered to 306 children with JIA. Rasch analyses were used to compare the difficulty of each of the 30 items of the questionnaire for children of 2 age groups (> or =10 years old and <10 years old). RESULTS: Independent of the physical disability level assessed by the Rasch model, 8 of the 30 items (27%) of the CHAQ were rated significantly different in the 2 age groups. Despite this age-related variation in item difficulty, the impact on the CHAQ disability index using its original scoring system remained low (about 0.25 points on a scale of 0-3). CONCLUSION: The difficulty of 8 of 30 items of the CHAQ depends on the respondent's age. Nevertheless, the design of the CHAQ and its scoring system remove most of the expected physical development bias.     

Health-related quality of life in community-dwelling men with pneumoconiosis

BACKGROUND: There have been few data on the health-related quality of life (HRQOL) in patients with pneumoconiosis. HRQOL is an important aspect of daily living in patients with industrial diseases. Objectives: To investigate the HRQOL and factors that contribute to the impairment of HRQOL in patients with pneumoconiosis. METHODS: 297 patients with pneumoconiosis were recruited from a community-based case registry. The HRQOL was measured with the St. George's Respiratory Questionnaire (SGRQ). Pulmonary function, comorbidity and psychosocial variables were also assessed. Patients' mood state was evaluated with the Geriatric Depression Scale (GDS). RESULTS: The mean SGRQ symptom, activity, impact and total scores were 38.0 +/- 19.3, 44.5 +/- 21.9, 34.2 +/- 17.9 and 39.4 +/- 17.4, respectively. These figures were lower than those reported in patients with chronic obstructive pulmonary disease who attended chest clinics. The GDS score (r = 0.38), forced expiratory volume in 1 s predicted (FEV(1)% predicted;r = -0.33) and comorbidity (r = 0.21) were the most important predictors of the HRQOL. CONCLUSIONS: Besides lung functions, chest clinicians should consider the impact of mood symptoms and comorbidity on the HRQOL in the management of patients with pneumoconiosis.     

Disease control and health‐related quality of life in juvenile idiopathic arthritis

Objective

To examine variability in health‐related quality of life (HRQOL) in children with juvenile idiopathic arthritis (JIA) experiencing no or minimal clinical symptoms, and in a subgroup with polyarticular JIA treated with biologic agents for 12 months.

Methods

We defined 3 samples using a database of patients ages 2–18 years with JIA (n = 524; patient visits [PV] = 2,354): visits (PV = 2,155) with no or minimal clinical symptoms on at least 1 of 4 measures (active joint count, pain, physician global disease rating, Childhood Health Assessment Questionnaire); visits (PV = 941) with no or minimal symptoms on all 4 measures; and children (n = 31) with polyarticular JIA treated with biologic agents for 12 months. HRQOL was measured using the Pediatric Quality of Life Inventory (PedsQL) and the percentage of patients with suboptimal HRQOL was determined.

Results

In PV with a PedsQL score, suboptimal HRQOL by self‐report occurred in 362 (20.6%) PV with at least 1 indicator of minimal symptoms, and in 64 (7.9%) PV with all 4 measures indicating minimal symptoms (519 [25.7%] and 95 [10.7%], respectively, by parent report). For children with polyarticular JIA treated for 12 months with biologic agents, 7 (25.9%) patients by self‐report and 10 (35.7%) patients by parent report were in the suboptimal range of HRQOL.

Conclusion

A substantial percentage of patients with JIA who report no or mild clinical symptoms experience suboptimal HRQOL. This is also true for patients with polyarticular JIA treated with biologic agents for 12 months. Although disease activity and clinical symptoms are related to HRQOL, considerable unexplained variation in HRQOL exists. HRQOL needs to be assessed independently regardless of clinical status.