Pain experience and pain coping strategies in children with juvenile idiopathic arthritis

OBJECTIVE: To compare reactions to cold pressor pain and pain coping strategies of patients with juvenile idiopathic arthritis (JIA), healthy children, and their parents. METHODS: We studied 16 children with JIA and one of their parents and 14 healthy children and one of their parents. Patients with JIA were selected from the patient population by fulfilling criteria for inclusion in a "high pain" group (n = 7) of patients with modest clinical arthritis activity, but who presented daily reports of pain in connection with everyday activities, and a "low pain" group (n = 9) who presented significant clinical arthritis activity, but who had only a few complaints of pain related to everyday activities. Dependent variables included pain threshold, discomfort, intensity and tolerance to cold pressor pain, and pain coping strategies. RESULTS: Patients with JIA exhibited significantly lower mean pain tolerance than healthy children. Disease duration correlated with both experimental and clinical pain measures, and JIA patients used significantly more Behavioral Distraction than healthy children. Correlations were found between children's and parents' use of Approach and Distraction related coping strategies. Correlations were also found for the coping strategy of Catastrophizing in the JIA patient group. For experimental pain coping strategies, a significant correlation was found between the JIA patients' and their parents' use of Distraction. For the JIA patients Positive Self-statements and Behavioral Distraction were inversely correlated with the clinical pain measures. In both children and parents the experimental pain coping strategies of Catastrophizing and Distraction were associated with the experimental pain response measures, and low pain JIA patients tended to use more Distraction pain coping strategies than high pain patients. CONCLUSION: The results indicate that JIA patients may differ from healthy children with regard to their responses to experimental pain as well as to their use of pain coping strategies. Pain coping strategies of JIA patients were associated with pain coping strategies of their parents, and use of pain coping strategies was associated with both experimental and clinical pain experience.     

Efficacy of custom foot orthotics in improving pain and functional status in children with juvenile idiopathic arthritis: a randomized trial

OBJECTIVE:. To compare the clinical efficacy of custom foot orthotics, prefabricated "off-the-shelf" shoe inserts, and supportive athletic shoes worn alone, on reducing pain and improving function for children with juvenile idiopathic arthritis (JIA). METHODS: Children with JIA and foot pain (n = 40) were randomized to one of 3 groups receiving: (1) custom-made semirigid foot orthotics with shock absorbing posts (n = 15), (2) off-the-shelf flat neoprene shoe inserts (n = 12), or (3) supportive athletic shoes with a medial longitudinal arch support and shock absorbing soles worn alone (n = 13). Foot pain and functional limitations were measured using the Pediatric Pain Questionnaire-visual analog scale (VAS), Timed Walking, Foot Function Index (FFI), and the Physical Functioning Subscale of the Pediatric Quality of Life Inventory (PedsQL). Measures were administered by personnel blinded to group status at baseline (before wearing the assigned intervention) and at 3 months' followup. RESULTS: Children in the orthotics group showed significantly greater improvements in overall pain (p = 0.009), speed of ambulation (p = 0.013), activity limitations (p = 0.002), foot pain (p = 0.019), and level of disability (p = 0.024) when compared with the other 2 groups. Both children and parents in the orthotics group reported clinically meaningful improvement in child health-related quality of life, although the group by time interaction did not show statistical significance. Except for a reduction in pain for supportive athletic shoes (paired t test, p = 0.011), neither the off-the-shelf shoe inserts nor the supportive athletic shoes worn alone showed significant effect on any of the evaluation measures. CONCLUSION: In children with JIA, custom-made semirigid foot orthotics with shock-absorbing posts significantly improve pain, speed of ambulation, and self-rated activity and functional ability levels compared with prefabricated off-the-shelf shoe inserts or supportive athletic shoes worn alone.     

Relationship of pain-coping strategies and pain-specific beliefs to pain experience in children with juvenile idiopathic arthritis

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.     

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

OBJECTIVE: 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. METHODS: 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). RESULTS: 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. CONCLUSION: 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.     

Juvenile idiopathic arthritis: parent-child discrepancy on reports of pain and disability

OBJECTIVE: To examine the incidence and nature of disagreements about pain and functional disability between parents and their children with juvenile idiopathic arthritis (JIA) and to identify demographic and psychosocial predictors of parent-child disagreement about pain and functional disability. METHODS: Participants comprised 63 children 8-16 years of age (mean 12.36 +/- 2.61) and their parents, followed as part of a longitudinal study of pain in children. During routine rheumatology clinic visits, children and their parents completed validated measures of pain, depressive symptoms, and functional disability. RESULTS: Parents and children often disagreed as to the frequency and intensity of pain and to the degree of disability caused by arthritis. Child depressive symptoms (p < 0.01) and parental perceptions of child limitations (p < 0.02) predicted parent-child disagreement about the frequency of the child's pain. Parental perceptions of child limitations also predicted parent-child disagreement about the child's level of functional disability (p < 0.04). Those children who estimated their level of disability to be different than their parents' rating also were more depressed compared to children who agreed with their parents about their level of disability (p < 0.01). CONCLUSION: Discrepancy between parent and child reports of pain and disability in children with JIA is common. Findings suggest that such disagreements in reporting of pain and functional disability by parents and their children with JIA are associated with underlying depressive symptoms in children.     

Parents' preferences for drug treatments in juvenile idiopathic arthritis: A discrete choice experiment

Objective

To examine parents' preferences for drug treatments and health outcomes in juvenile idiopathic arthritis (JIA) and identify demographic and health‐related factors that significantly impact choice.

Methods

A discrete choice experiment was conducted with 105 parents of children with JIA who were cared for by a rheumatologist at The Hospital for Sick Children in Canada. Attributes evaluated included “drug treatment,” “child reported pain from arthritis,” “participation in daily activities,” “side effects,” “days missed from school,” and “cost to you.” Multinomial logit regression was used to estimate the relative importance of each attribute level and interaction term.

Results

Parents made tradeoffs between characteristics of the drug treatments and health outcomes. “Participation in daily activities” was the most important attribute, followed by “child reported pain from arthritis” and “cost to you.” Parents of children with longer disease durations had stronger preferences for improved participation in daily activities, whereas parents of older JIA patients had stronger preferences for improved control of pain.

Conclusion

Parents of children with JIA demonstrated strong preferences for treatments that reduce pain and improve daily functioning regardless of the associated side effects, level of responsibility required for drug administration, and days missed from school. Parents of children with longer disease durations and those who had been prescribed aggressive therapies had a greater preference for treatment effectiveness. These findings support the need for considering parental preferences in decisions regarding the choice of treatment for JIA.     

Comparison between children with juvenile idiopathic arthritis and their parents concerning perceived treatment adherence

OBJECTIVE: Adherence to treatment in juvenile idiopathic arthritis (JIA) may be associated with better outcomes. Clinicians must be aware of possible divergence between parents and children regarding adherence, in order to gain a better understanding of adherence and factors associated with it. The objective was to determine the level of agreement between children with JIA and their parents concerning perception of the child's adherence to the treatment regimen (for both medications and exercises). METHODS: Fifty patients and their parents, who attended the JIA clinic at the Montreal Children's Hospital, completed the Child Adherence Report Questionnaire and the Parent Adherence Report Questionnaire. Paired t-tests were used to compare parents' and children's scores for adherence questions and agreements were analyzed by intraclass correlation coefficients (ICCs). RESULTS: Parents reported that their children showed more negative reactions to taking medication and doing exercises, more helpfulness from the medication, and more difficulty to carry out the exercise program than their children reported. ICCs (95% confidence interval) for medications and exercises were, respectively, 0.32 (0.04, 0.56) and 0.77 (0.61, 0.87) for overall adherence, 0.33 (0.05, 0.57) and 0.39 (0.09, 0.62) for perceived difficulty to following treatment, and 0.37 (0.09, 0.60) and 0.45 (0.17, 0.67) for how often children had negative reactions following treatment. Levels of agreement for perceived helpfulness of treatments were quite low. CONCLUSION: Agreement between parents and children concerning adherence was at best moderate, and generally better for the exercise program than for prescribed medications.     

Health related quality of life in Middle Eastern children with beta-thalassemia

ABSTRACT: BACKGROUND: Thalassemia is a common disorder worldwide with a predominant incidence in Mediterranean countries, North Africa, the Middle East, India, Central Asia, and Southeast Asia. Whilst substantial progress has been made towards the improvement of Health related quality of life (HRQoL) in western countries, scarce evidence-based data exists on HRQol of thalassemia children and adolescents living in developing countries. Patients and methods We studied 60 thalassemia children from Middle Eastern countries with a median age of 10 years (range 5 to 17 years). HRQoL was assessed with the Pediatric Quality of Life Inventory (PedsQL) 4.0. The Questionnaire was completed at baseline by all patients and their parents. The agreement between child-self and parent-proxy HRQoL reports and the relationship between HRQoL profiles and socio-demographic and clinical factors were investigated. RESULTS: The scores of parents were generally lower than those of their children for Emotional Functioning (mean 75 vs 85; p = 0.002), Psychosocial Health Summary (mean 70.3 vs 79.1; p = 0.015) and the Total Summary Score (mean 74.3 vs 77.7 p = 0.047). HRQoL was not associated with ferritin levels, hepatomegaly or frequency of transfusions or iron chelation therapy. Multivariate analysis showed that a delayed start of iron chelation had a negative impact on total PedsQL scores of both children (p = 0.046) and their parents (p = 0.007). CONCLUSIONS: The PedsQL 4.0 is a useful tool for the measurement of HRQoL in pediatric thalassemia patients. This study shows that delayed start of iron chelation has a negative impact on children's HRQOL.     

Quality of life of asthmatic children and adolescents: Portuguese translation,adaptation, and validation of the questionnaire “Pediatric Quality of Life (PedsQL) Asthma Module”

Objective: The objectives of the study were to translate, validate, and verify the psychometric properties of the Portuguese version of the instrument “Pediatric Quality of Life Asthma Module” (PedsQL Asthma) culturally adapted for the Brazilian culture. Methods: After being translated to Portuguese and being culturally adapted, the questionnaire was answered by 200 asthmatic children and adolescents (aged 2–18) as well as the adults responsible for them. Validation required the use of the following instruments: PedsQL Asthma Children (applied to children and adolescents), PedsQL Asthma Parents (applied to adults responsible for children and adolescents), Pediatric Asthma Quality of Life (PAQLQ), Asthma Control Test (ACT) or Childhood Asthma Control Test (C-ACT), as well as socioeconomic and personal information questionnaires. A group of 45 clinically stable children repeated the questionnaires 15–60 days after answering the first questionnaire. Results: Correlations between the scores of PedsQL Children and PedsQL Parents (r = 0.67), PedsQL Children and PAQLQ (r = 0.66), and PedsQL Parents and PAQLQ (r = 0.64) were moderate and significant. Correlations were higher for men (r = 0.72) when analyzing the children's and parents’ answers to PedsQL according to gender. The 5- to 7-year-old age group had the strongest correlations with PAQLQ (r = 0.79). Cronbach's alpha coefficient for PedsQL Children and Parents had values of 0.85 and 0.87, respectively. A high concordance was observed in both tests at different times, with kappa values of 0.89 and 0.87 for PedsQL Children and Parents, respectively. Conclusion: The instrument used in this study was considered valid, consistent, and reproducible and has acceptable psychometric properties for the Brazilian population.     

Relationship of pain‐coping strategies and pain‐specific beliefs to pain experience in children with juvenile idiopathic arthritis

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.

     

Validity of reported pain as a measure of clinical state in juvenile rheumatoid arthritis.

Reported pain is one valid indicator of clinical state which should be used in the assessment and management of children with juvenile rheumatoid arthritis. Parents' reports of children's pain for 101 children with juvenile rheumatoid arthritis differed significantly by type of juvenile rheumatoid arthritis. When multiple regression was used separately for pauciarticular and polyarticular classifications of juvenile rheumatoid arthritis a measure of clinical state, which reflected joint activity, morning stiffness, and overall disease activity as rated by the doctor, had a significant and independent effect upon pain reported by parents. The child's age was not significantly related to the pain reported by parents. Children's pain reports did not differ significantly between older and younger children.     

Development of a parent-proxy quality-of-life chronic cough-specific questionnaire: clinical impact vs psychometric evaluations

BACKGROUND: Chronic cough affects at least 7% of children, and the impact of this on families is significant. Although adult cough-specific quality-of-life (QOL) instruments have been shown to be a useful cough outcome measure, no suitable cough-specific QOL for parents of children with chronic cough exists. This article compares two methods of item reduction (clinical impact and psychometric) and reports on the statistical properties of both QOL instruments. METHOD: One hundred seventy children (97 boys and 73 girls; median age, 4 years; interquartile range, 3 to 7.25 years) and one of their parents participated. A preliminary 50-item parent cough-specific QOL (PC-QOL) questionnaire was developed from conversations with parents of children with chronic cough (ie, cough for > 3 weeks). Parents also completed generic QOL questionnaires (eg, Pediatric Quality of Life Inventory, version 4.0 [PedsQL4.0] and the 12-item Short Form Health Survey, version 2 [SF-12v2]). RESULTS: The clinical impact and psychometric method of item reduction resulted in 27-item and 26-item PC-QOL questionnaires, respectively, with approximately 50% of items overlapping. Internal consistency among the final items from both methods was excellent. Some evidence for concurrent and criterion validity of both methods was established as significant correlations were found between subscales of the PC-QOL questionnaire and the scales of the SF-12v2 and PedsQL4.0 scores. The PC-QOL questionnaire derived from both methods was sensitive to change following an intervention. CONCLUSION: Chronic cough significantly impacts on the QOL of both parents and children. Although the PC-QOL questionnaires derived from a clinical impact method and from a psychometric method contained different items, both versions were shown to be internally consistent and valid. Further testing is required to compare both final versions to objective and subjective cough measures.     

Insomnia and quality of life in children referred for limb pain

OBJECTIVE: Children with limb pain have significantly diminished quality of life. Although this could result directly from the pain, we investigated the extent to which associated insomnia may contribute. METHODS: A consecutive series of pediatric rheumatology clinic patients (age 3-18 yrs) who presented for initial evaluation of limb pain were offered participation. Parents and children, as appropriate, completed the Pediatric Sleep Questionnaire and Pediatric Quality of Life Inventory (PedsQL 4.0). Validated measures of pain duration and current pain level were provided by the children. Subjects were judged to have substantial insomnia if they had at least 2 of the following symptoms: difficulty falling asleep at night, waking more than twice on average, trouble falling back to sleep, or waking in the morning feeling unrefreshed. Linear regression was used to model the total PedsQL 4.0 score on insomnia, pain duration, and pain level. RESULTS: Seventy-four subjects were recruited (47 girls, mean age 10 +/-3.9); 25 (33%) had juvenile idiopathic arthritis and 40 (54%) had insomnia. A low PedsQL 4.0 score was predicted by insomnia (p < 0.001), but not by pain duration or level (each p > 0.10). Neither pain level nor duration differed significantly between subjects with or without insomnia (each p > 0.10). CONCLUSION: Significant insomnia may affect half of the children who present to a pediatric rheumatology clinic for limb pain. Quality of life in this setting may depend more on insomnia than on current level or duration of pain.     

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.     

Disease activity and fatigue in juvenile idiopathic arthritis

Objective

To examine the association between parent/proxy‐ and child‐reported fatigue and disease activity in children with polyarticular, extended oligoarticular, and persistent oligoarticular juvenile idiopathic arthritis (JIA).

Methods

We enrolled a cross‐sectional cohort of 309 children recruited from the Seattle Children's Hospital rheumatology clinic from 2009–2011. Parents and children completed the PedsQL Multidimensional Fatigue Scales. The parent/proxy, child, and/or physician provided additional disease activity data at each clinic visit, including active joint count, pain, and the Childhood Health Assessment Questionnaire (C‐HAQ). Disease activity was dichotomized as active or inactive using the American College of Rheumatology provisional criteria for clinically inactive disease. The Juvenile Arthritis Disease Activity Score (JADAS) was also calculated. Linear regression was used to examine the associations between fatigue and disease activity.

Results

Associations among fatigue, clinically inactive disease, and the JADAS were not statistically significant after controlling for pain. In the multivariable models of fatigue, the C‐HAQ and parent/child‐reported disease activity were significantly associated with fatigue; however, only the C‐HAQ remained significantly associated after adjustment for pain. The C‐HAQ and parent/child‐reported disease activity explained 17% and 30% of the variance in fatigue for the parent/proxy‐ and child‐reported multivariable models, respectively.

Conclusion

In this cohort, functional ability, as measured by the C‐HAQ, was significantly associated with fatigue. Child‐ and parent/proxy‐reported pain were important confounders of the relationship between fatigue and disease activity. Routinely incorporating pain and fatigue into interventional and observational trials of JIA will enable better delineation of the relationships between these variables.     

Parental pain is not associated with pain in the child: a population based study

BACKGROUND: Child pain is associated with adverse psychosocial factors. Some studies have shown an association between children's and parental pain. Children may "learn" pain behaviour from their parents. OBJECTIVES: To examine whether an association exists between parent and child pain, and, if so, whether this relationship persists after adjusting for psychosocial difficulties in the child. METHODS: 1326 schoolchildren took part in a questionnaire based, cross sectional survey. Parents of study participants were sent a postal questionnaire. Occurrence of body pain was ascertained using blank body manikins and, in children, psychosocial factors were assessed using the Strengths and Difficulties Questionnaire. Three child-parent pain relationships were examined: any child pain with any parental pain or with parental widespread pain; and child low back pain with parental low back pain. RESULTS: The risk of child pain associated with parental reporting of pain was minor, and non-significant. Even when both parents reported widespread pain, the relative risk of pain in the child, after adjusting for age and psychosocial difficulties, was 1.2 (95% CI 0.5 to 3.2). CONCLUSIONS: Parental pain is not a risk for child pain. Pain behaviour is not learned. Rather, child pain is probably attributable to individual factors and the social environment.     

Health-related quality of life among children and adolescents: associations with obesity

OBJECTIVE: To assess the impact of obesity on health-related quality of life (HRQOL) of children, and to compare HRQOL scores of obese children in a hospital versus community setting. DESIGN: A cross-sectional study in two clinical samples. SUBJECTS: A total of 182 children and adolescents recruited from the community pediatric clinics and a hospital-based obesity clinic. MEASUREMENTS: Obesity was defined as body mass index (BMI) >95th percentile for age and gender. Subjects were divided into quartiles of BMI Z-scores each containing 45 or 46 children. The first two quartiles correspond to normal BMI, 3rd and 4th quartiles represent moderate and severe obesity, respectively. HRQOL was assessed by the Pediatric Quality of Life Inventory (PedsQL) questionnaire submitted by both children and their parents. RESULTS: Obese children reported significantly lower HRQOL in physical, social and school domains compared with normal weight children (P<0.01). Analyzing results of HRQOL by BMI quartiles showed that the emotional and school domains scores of the moderately obese children were similar to the normal BMI quartiles. Only in the 4th quartile, that of children with severe obesity, were scores significantly lower. In contrast, in both physical and social domains scores decreased progressively with increased BMI Z-scores. In the obese group, parents' scores were lower than the children's in all domains. HRQOL scores of obese children assessed in the hospital clinic were similar to that of obese children assessed in the community. CONCLUSIONS: Moderately obese children had similar emotional and school HRQOL scores as normal weight children, whereas in the physical domain, a significant difference was documented even in moderate obesity. Parents of obese children perceived their child's HRQOL lower than the children themselves. We believe that intervention programs aimed at improving HRQOL should be directed to both parents and children. Understanding the resilience of moderately obese children in school and emotional domains may assist us in the management of childhood obesity.     

Growing up and moving on in rheumatology: parents as proxies of adolescents with juvenile idiopathic arthritis

OBJECTIVE: To examine agreement about physical health, functional ability, and health-related quality of life (HRQOL) between adolescents with juvenile idiopathic arthritis (JIA) and their parents. METHODS: The study group comprised 303 adolescent-parent dyads who completed individual questionnaires, including the Childhood Health Assessment Questionnaire with visual analog scales for pain and general well-being, and the Juvenile Arthritis Quality of Life Questionnaire. Agreement was determined using the Bland and Altman method. RESULTS: Approximately half of the adolescent-parent dyads showed clinically acceptable agreement for pain, general well-being, functional disability, and HRQOL. Where discrepancies occurred, there were similar numbers of parental overestimation and underestimation, with the exception that parents rated functional ability worse than did adolescents. Parents were also consistent with respect to overestimation or underestimation, irrespective of the health domain in question. Agreement was associated with better disease-related outcome variables, but was not significantly influenced by demographic factors. Agreement between adolescents and parents was dependent on the level of disease outcome and the health domain under scrutiny, and was less for moderate disease outcomes (as compared with mild or severe) and less visible phenomena (e.g., pain, global well-being). CONCLUSION: There is a wide variation in agreement between adolescents with JIA and their parents that is dependent on which health-related variable is under scrutiny. Proxy report is likely to be valid for adolescents with JIA at either the mild or severe end of the spectrum and/or for the visible manifestations of the disease. Consideration of both adolescent and parent-proxy reports is therefore important in future research.     

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.     

The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module

OBJECTIVE: The Pediatric Quality of Life Inventory (PedsQL) is a modular instrument designed to measure health-related quality of life (HRQOL) in children and adolescents ages 2-18 years. The 23-item PedsQL 4.0 Generic Core Scales are multidimensional child self-report and parent proxy-report scales developed as the generic core measure to be integrated with the PedsQL disease-specific modules. The 22-item PedsQL 3.0 Rheumatology Module was designed to measure pediatric rheumatology-specific HRQOL. This study was undertaken to demonstrate the reliability, validity, and responsiveness of the PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Rheumatology Module in pediatric rheumatology. METHODS: The 4 PedsQL 4.0 Generic Core Scales (physical, emotional, social, and school functioning) and the 5 PedsQL 3.0 Rheumatology Module scales (pain and hurt, daily activities, treatment, worry, and communication) were administered to 231 children and 244 parents (271 subjects accrued overall) recruited from a pediatric rheumatology clinic. RESULTS: Internal consistency reliability for the PedsQL Generic Core total scale score (alpha = 0.91 for child self report, alpha = 0.93 for parent proxy report), physical health summary score (alpha = 0.87 for child self report, alpha = 0.89 for parent proxy report), and psychosocial health summary score (alpha = 0.86 for child self report, alpha = 0.90 for parent proxy report) were acceptable for group comparisons. The Rheumatology Module scales also demonstrated acceptable reliability for group comparisons (alpha = 0.75-0.86 for child self report, alpha = 0.82-0.91 for parent proxy report). Validity was demonstrated using the known-groups method. The PedsQL distinguished between healthy children and children with rheumatic diseases as a group. The responsiveness of the PedsQL was demonstrated through patient change over time as a result of clinical intervention. CONCLUSION: The results demonstrate the reliability, validity, and responsiveness of the PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Rheumatology Module in pediatric rheumatology.