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.     

The PedsQL Multidimensional Fatigue Scale in pediatric rheumatology: reliability and validity

OBJECTIVE:. The PedsQL (Pediatric Quality of Life Inventory) is a modular instrument designed to measure health related quality of life (HRQOL) in children and adolescents ages 2-18 years. The recently developed 18-item PedsQL Multidimensional Fatigue Scale was designed to measure fatigue in pediatric patients and comprises the General Fatigue Scale (6 items), Sleep/Rest Fatigue Scale (6 items), and Cognitive Fatigue Scale (6 items). The PedsQL 4.0 Generic Core Scales were developed as the generic core measure to be integrated with the PedsQL Disease-Specific Modules. The PedsQL 3.0 Rheumatology Module was designed to measure pediatric rheumatology-specific HRQOL. Methods. The PedsQL Multidimensional Fatigue Scale, Generic Core Scales, and Rheumatology Module were administered to 163 children and 154 parents (183 families accrued overall) recruited from a pediatric rheumatology clinic. Results. Internal consistency reliability for the PedsQL Multidimensional Fatigue Scale Total Score (a = 0.95 child, 0.95 parent report), General Fatigue Scale (a = 0.93 child, 0.92 parent), Sleep/Rest Fatigue Scale (a = 0.88 child, 0.90 parent), and Cognitive Fatigue Scale (a = 0.93 child, 0.96 parent) were excellent for group and individual comparisons. The validity of the PedsQL Multidimensional Fatigue Scale was confirmed through hypothesized intercorrelations with dimensions of generic and rheumatology-specific HRQOL. The PedsQL Multidimensional Fatigue Scale distinguished between healthy children and children with rheumatic diseases as a group, and was associated with greater disease severity. Children with fibromyalgia manifested greater fatigue than children with other rheumatic diseases. CONCLUSION: The results confirm the initial reliability and validity of the PedsQL Multidimensional Fatigue Scale in pediatric rheumatology.     

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 (α = 0.91 for child self report, α = 0.93 for parent proxy report), physical health summary score (α = 0.87 for child self report, α = 0.89 for parent proxy report), and psychosocial health summary score (α = 0.86 for child self report, α = 0.90 for parent proxy report) were acceptable for group comparisons. The Rheumatology Module scales also demonstrated acceptable reliability for group comparisons (α = 0.75–0.86 for child self report, α = 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.

     

Differences in disease outcomes between medicaid and privately insured children: possible health disparities in juvenile rheumatoid arthritis

OBJECTIVE: To determine the relationship between health insurance status and disease outcome in children with juvenile rheumatoid arthritis (JRA). METHODS: JRA patients followed at a tertiary pediatric rheumatology center were assessed for the number of active joints and number of joints with limited range of motion. Disease activity, patient well-being, and pain were measured. Disability was assessed by the Childhood Health Assessment Questionnaire, health-related quality of life by the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scale, and the PedsQL Rheumatology Module. Health care resource utilization was estimated based on the number of billing events for health services coded in administrative databases; these databases also provided information on patient health insurance status. Children insured by Medicaid or similar state programs for low-income families were considered to have Medicaid status. Disease outcomes of children with Medicaid status was compared with that of children with private health insurance. RESULTS: Forty (14%) of the 295 children with JRA had Medicaid status. Patients with Medicaid status were more often of nonwhite race (P < or = 0.04) and more frequently had a polyarticular or systemic disease course (P = 0.04) compared with other patients (n = 255). After correction for differences in disease duration, race, JRA onset, and JRA course between groups, children with Medicaid status continued to have significantly higher disability (P < 0.0003), and lower mean PedsQL Generic Core Scale scores (P < 0.05), while health resource utilization appeared similar between groups. CONCLUSION: Despite apparently similar health resource utilization and joint involvement, Medicaid status is associated with significantly lower health-related quality of life and higher disability in JRA.     

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.     

Idiopathic musculoskeletal pain syndromes in children.

Between 1982 and 1990, 81 children with localized or diffuse musculoskeletal pain, for which no cause could be found were seen in a pediatric rheumatology clinic. Forty-one children had localized idiopathic pain and 40 had diffuse idiopathic pain. Twenty-four of the patients with localized idiopathic pain fulfilled criteria for definite reflex neurovascular dystrophy. Thirty-five patients with diffuse idiopathic pain fulfilled criteria for fibromyalgia. Four patients with localized idiopathic pain (10%) developed diffuse idiopathic pain during followup; four patients with diffuse idiopathic pain (10%) had a history of localized idiopathic pain and one patient had previously been diagnosed as having Tietze's syndrome. Recurrences or persistence of pain was very common. Many children had potentially important stressors including single parent families, histories of sexual abuse, and learning difficulties. Idiopathic musculoskeletal pain is a common cause of referral to a pediatric rheumatology clinic and is often associated with significant morbidity.     

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.     

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.     

Reliability,Validity, and Responsiveness of the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales and Asthma Symptoms Scale in Vulnerable Children With Asthma

Background. Patient-reported outcomes such as health-related quality of life (HRQOL) are increasingly used as primary endpoints in clinical trials. The Pediatric Quality of Life Inventory? (PedsQL?) is widely used as a measure of HRQOL and may be a particularly suitable primary outcome in pediatric asthma clinical trials. Objectives. To examine the reliability, validity, and responsiveness to clinical change of the PedsQL? 4.0 Generic Core Scales and PedsQL? Asthma Module Asthma Symptoms Scale in a sample of vulnerable children with persistent asthma recruited from Federally Qualified Health Centers. Methods. Children (N = 252; ages 3 to 14 years) with persistent asthma (27% mild, 40.9% moderate, 32.1% severe) and their parents (93.7% mother, 83.3% Hispanic, 76.9% Spanish-speaking, 72.6% less than a high school diploma) enrolled in a clinical trial completed the PedsQL? 4.0 Generic Core Scales, the PedsQL? 3.0 Asthma Module Asthma Symptoms Scale, and a measure of asthma symptom frequency (used as an indicator of clinical change) at baseline and 3-month follow-up. Results. The PedsQL? demonstrated adequate internal consistency reliability and convergent and discriminative validity. Based on intra- and intersubject change, effect sizes, and standard errors of measurement, the PedsQL? demonstrated responsiveness to clinical change. Conclusions. For both child self-report and parent proxy-report, the PedsQL? Generic Core Scales Total Scale score and the PedsQL? Asthma Symptoms Scale are suitable for use as primary asthma clinical trial outcomes.     

The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis

OBJECTIVES: To investigate the relationship between health-related quality of life (HRQL), experience of pain and pain coping strategies in children with juvenile idiopathic arthritis (JIA). To compare reports describing these variables obtained from children and their parents. METHODS: Participants were 59 children aged 8 to 18 yr with JIA and their parents. Parents and children completed the PedsQL generic core scales and arthritis module, the visual analogue scale of the Varni-Thompson Pediatric Pain Questionnaire, and the Waldron/Varni Pediatric Pain Coping Inventory. Parents rated children's functional disability using the Childhood Health Assessment Questionnaire. RESULTS: Parents reported significantly lower scores (indicating worse HRQL) than children on five of the eight PedsQL scales rating children's HRQL. Parents and children reported a significant negative relationship between pain levels and the PedsQL scores assessing children's physical, emotional and social functioning. They also reported a significant negative relationship between scores on several pain coping scales and scores on the PedsQL scales. However, the pattern of these relationships varied for reports from parents and children. CONCLUSIONS: Pain intensity and pain coping strategies have a significant and independent relationship with several domains that comprise the HRQL of children with JIA. However, parents and children have differing perceptions of the nature of these relationships. The differences emphasize the importance of clinicians obtaining information about children's HRQL, pain levels and pain coping strategies from both parents and children.     

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.     

Health-related quality of life in perinatally HIV-infected children in the Netherlands

Combination antiretroviral therapy (cART) can alter HIV infection in children into a chronic condition. Studies investigating health-related quality of life (HRQoL) in HIV-infected children are scarce, and lacking from Western Europe. This study aimed to compare the HRQoL of clinically stable perinatally HIV-infected children to healthy, socioeconomically (SES)-matched controls as well as the Dutch norm population, and to explore associations between HIV and cART-related factors with HRQoL. HIV-infected and healthy children aged 8–18 years completed the Pediatric Quality of Life Inventory? 4.0 (PedsQL?). We determined differences between groups on PedsQL? mean scores, and the proportion of children with an impaired HRQoL per group (≥1 SD lower than the Dutch norm population). Logistic regression models were used to explore associations between disease-related factors and HRQoL impairment. In total, 33 HIV-infected and 37 healthy children were included. There were no differences in the mean PedsQL? subscales between HIV-infected children and both control groups. The proportion of children with an impaired HRQoL was higher in the HIV-infected group (27%) as compared to the healthy control group (22%) and the Dutch norm (14%) on the school functioning subscale (HIV vs. Dutch norm: P?=?.045). Mean scores of HRQoL of perinatally HIV-infected children in the Netherlands were not different from a SES-matched control group, or from the Dutch norm population. However, the HIV-infected group did contain more children with HRQoL impairment, suggesting that HIV-infected children in the Netherlands are still more vulnerable to a compromised HRQoL.     

Analysis of a pediatric rheumatology clinic population

This analysis evaluates the role of a pediatric rheumatology clinic in assessing children with suspected rheumatic diseases and establishes relative disease frequencies in a clinic population. The study population comprised 875 children referred to a pediatric rheumatology clinic serving a population of 290,000 children. The mean annual referral rate was 113 patients. A diagnosis was established in 580 (66%) of whom 337 (58%) had a rheumatic disease. Of those with a rheumatic disease 156 (46%) had juvenile rheumatoid arthritis, 104 (31%) a spondyloarthropathy, 62 (18%) a connective tissue/collagen vascular disorder and 15 (5%) a variety of other conditions. Of the 243 diagnosed as having a nonrheumatic disease 79 (33%) had a mechanical or traumatic cause for musculoskeletal symptoms, 33 (14%) had an infection, 15 (6%) a neoplastic disorder and 71 (29%) a variety of other disorders. In addition, 45 children (19%) were evaluated because of family histories of rheumatic diseases or questionably abnormal symptoms or signs; after evaluation all these children were considered to be normal. The remaining group comprised 295 subjects (34%) for whom a definite diagnosis has not been made. In addition to diagnosing and caring for children with rheumatic disorders a pediatric rheumatology clinic serves to identify nonrheumatic conditions and provides information concerning relative frequencies and epidemiologic characteristics of childhood rheumatic diseases.     

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.     

Longitudinal analysis of a pediatric rheumatology clinic population

OBJECTIVE: To analyze a prospectively maintained pediatric rheumatology clinic disease registry. METHODS: A total of 3269 consecutive referrals to the Pediatric Rheumatology Clinic, University of Saskatchewan, during the period 1981-2004 were analyzed. RESULTS: Among 3269 patients, a diagnosis was established in 2098 (64.2%). Within this group, 72 subjects (3.4%) were determined to be healthy. Of the remaining 2026 diagnosed patients (62.0% of the total population), 1032 (50.9%) had a rheumatic disease and 994 (49.1%) a nonrheumatic disease. A diagnosis was not established in 1171 patients (35.8%). Among the 1032 patients with a rheumatic disease, 326 (31.6%) had juvenile rheumatoid arthritis (JRA), 360 (34.9%) a spondyloarthropathy (SpA), and 225 (21.8%) a collagen vascular/connective tissue rheumatic disease. The remaining 121 patients with a rheumatic disease (11.7%) had a variety of other conditions. Of the 994 nonrheumatic disease patients, 37 (3.7%) with ocular inflammatory conditions had been referred to exclude an associated rheumatic disease. The remaining group of 957 patients comprised 345 (36.1%) with an orthopedic, mechanical or traumatic condition, 231 (24.1%) had an infection, 45 (4.7%) a hematologic or neoplastic disease, and 336 (35.1%) a variety of other conditions. Current clinic point prevalences for JRA, SpA, and collagen vascular diseases are 35.0, 16.9 and 17.7/100,000, respectively. The mean annual clinic referral incidences of JRA, SpA, and collagen vascular/connective tissue diseases were, respectively, 4.7, 5.2, and 1.7/100,000 children. CONCLUSION: Disease registries help establish the frequencies and spectrum of childhood rheumatic diseases and the role of pediatric rheumatology programs in evaluating and caring for children with a wide variety of conditions. Longitudinal disease registries aid in characterizing clinical, epidemiologic, and demographic features of childhood rheumatic diseases.     

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.     

Factors influencing the quality of life of Moroccan patients with juvenile idiopathic arthritis

The aim of our study is to investigate the factors influencing the quality of life, assessed by the Pediatric Quality of Life Inventory 4.0 (PedsQL4) Generic Score Scales, in Moroccan patients with juvenile idiopathic arthritis. This is a cross-sectional study conducted between January and June 2012, covering children with juvenile idiopathic arthritis (JIA) seen at the consultations of El Ayachi Hospital and Children’s Hospital of the University Hospital of Rabat. Quality of life is assessed by the PedsQL4 which is a questionnaire composed of 23 items, completed by the child and the parent; the response to each item ranges from 0 to 100, so that higher scores indicate a better quality of life. The functional impact is assessed by the Childhood Health Assessment Questionnaire (CHAQ), and the disease activity by the number of tender and swollen joints, visual analogue scale (VAS) activity, erythrocyte sedimentation rate (ESR), and C-reactive protein. Forty-seven patients are included; the average age of the patients is 11?±?3.35 years, and 40.4 % are females, with a median disease duration of 4 (2; 6) years. The oligoarticular form presents 26.7 %, the systemic form 24.4 %, and the enthesic form 22.2 %. The median of PedsQL4 is 80.43 (63.19; 92.93), and the median of the CHAQ is 0 (0; 1). Our study shows that some clinical and biological characteristics have significant effects on PedsQL by both parent and child reports. This study suggests that the achievement of the quality of life of our patients with JIA depends on the disease activity measured by swollen joints, the number of awakenings, parent VAS, physician VAS, patient VAS, and the ESR.     

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.     

Quality of Life and Psychological Well-being in Children and Adolescents with Disorders of Sex Development

Objective:The aim of this study was to assess the quality of life (QoL) and psychological well-being in child and adolescent with disorders of sex development (DSD).Methods:Sixty-two cases, aged 2-18 years, who were followed by a multidisciplinary DSD team were included. All participants and their parents were requested the complete the Pediatric Quality Of Life Inventory (PedsQL) and the Strengths and Difficulties Questionnaire. The psychiatric diagnoses of the patients were evaluated according to Schedule for Affective Disorders and Schizophrenia for School-Age Children/Present and Lifetime Turkish Version.Results:There was no significant difference between the 46,XX DSD and 46,XY DSD groups for both child and parent in Total PedsQL score. In the subscale scores, the PedsQL Physical Functionality Score reported by children was significantly lower for the 46,XX DSD group than for the 46,XY DSD group (p=0.01). There was a psychiatric diagnosis in 25.8% of cases. The PedsQL School Functionality Score reported by children in the group with psychiatric diagnosis was significantly lower than the group without psychiatric diagnosis (p=0.018). In the group with psychiatric diagnosis, the PedsQL Total Score and the subscale scores (Emotional Functionality Score, Social Functionality Score, School Functionality) reported by parents were significantly lower than in parents of the group without psychiatric diagnosis.Conclusion:This study emphasized that psychiatric disorders in DSD patients negatively affect the QoL. Psychiatric support and counseling from a multidisciplinary team are very important for families affected by DSD.     

False-positive interpretations in respiratory cytopathology

The objective of the present study was to determine the reliability and validity of the Persian translation of the Pediatric Quality of Life Inventory (PedsQL?) 4.0 Generic Core Scales Young Adult Version in an Iranian sample of young adult patients with rheumatoid arthritis (RA). One hundred ninety-seven young adult patients with RA completed the 23-item PedsQL? and the 36-item Short-Form Health Survey (SF-36). Disease activity based on Disease Activity Score 28 was also measured. Internal consistency and test–retest reliability, as well as construct, discriminant, and convergent validity, were tested. Confirmatory factor analysis (CFA) was used to verify the original factor structure of the PedsQL?. Also, responsiveness to change in PedsQL? scores over time was assessed. Cronbach’s alpha coefficients ranged from α?=?0.82 to α?=?0.91. Test–retest reproducibility was satisfactory for all scales and the total scale score. The PedsQL proved good convergent validity with the SF-36. The PedsQL distinguished well between young adult patients and healthy young adults and also RA groups with different comorbidities. The CFA did not confirm the original four-factor model, instead, analyses revealed a best-fitting five-factor model for the PedsQL? Young Adult Version. Repeated measures analysis of variance indicated that the PedsQL scale scores for young adults increased significantly over time. The Persian translation of the PedsQL? 4.0 Generic Core Scales Young Adult Version demonstrated good psychometric properties in young adult patients with RA and can be recommended for the use in RA research in Iran.