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™ 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.

     

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.     

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.     

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.     

Quality of life in children with Type 1 diabetes: a comparison of general and diabetes‐specific measures and support for a unitary diabetes quality‐of‐life construct

Aims To assess the factor structure of the Pediatric Quality of Life Inventory (PedsQL) Diabetes Module and to compare the PedsQL general and diabetes‐specific quality of life (QOL) measures regarding psychometric properties and relations to relevant outcomes. Methods The instruments were completed by 447 children age 9 to 15.5 years with Type 1 diabetes > 1 year from four US paediatric diabetes clinics; parents completed the parallel parent‐proxy measures. Principal components factor analysis was used to examine the factor structure of the PedsQL diabetes module. Analyses of the generic and diabetes QOL measures included psychometric properties, parent–child correlations and correlations with depression, adherence and glycated haemoglobin (HbA_1c). Results The factor structure of the PedsQL diabetes module did not support the original five subscales. Both one‐ and two‐factor models were supported; however, parallel parent and child subscales did not emerge. While the generic and diabetes‐specific measures of QOL were moderately to highly correlated with each other, the constructs were differentially associated with relevant diabetes outcomes. Generic QOL was more highly associated with depression than diabetes QOL. Conversely, diabetes QOL was more highly associated with adherence and HbA_1c, although this was seen to a greater extent for parent‐proxy report than for child report. Conclusions Factor analysis of the PedsQL diabetes module supports the use of a total diabetes QOL score. Findings regarding the associations of the generic and diabetes modules with diabetes outcomes underscore the unique contribution provided by both generic and diabetes QOL.     

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.     

Validity of self-administered quality of well-being scale in musculoskeletal disease

OBJECTIVE: To evaluate the self-administered Quality of Well-Being (QWB-SA) Scale for patients with rheumatic diseases. METHODS: Family medicine patients (n = 562) and rheumatology patients (n = 334) were assessed using the following tools: QWB-SA, Health Assessment Questionnaire (HAQ), Arthritis Impact Measurement Scales (AIMS), and Rapid Assessment of Disease Activity in Rheumatology (RADAR). RESULTS: Patients with arthritis had significantly lower QWB-SA scores and significantly higher HAQ scores than family medicine patients with and without adjustment for covariates. The QWB-SA was significantly associated with quartiles from the RADAR, AIMS, and HAQ, providing evidence for the validity of the generic measure in patients with arthritis. Discriminant function analysis was used to create an arthritis-specific scoring system for the QWB-SA. Analyses demonstrated systematic relationships between the Quality of Well-Being arthritis composite and the disease-specific RADAR, AIMS, and HAQ. CONCLUSIONS: Evidence supports the validity of the QWB-SA for patients with rheumatic diseases. QWB-SA items can be used to calculate an arthritis-specific score. The QWB-SA can be used to gain generic information for cost-utility analysis and disease-specific outcomes information for patients with arthritis.     

The Gap Study (GapS) interview--developing a process to determine the meaning and determinants of quality of life in children with arthritis and rheumatic disease

OBJECTIVE: Quality of Life (QOL) is a ubiquitous yet rarely precisely defined term. QOL may be determined by the differences (gaps) between our current situation and our expectations. Contemporary methods of measuring QOL often do not take these gaps into consideration. We performed this study to develop items and methods for measuring and valuing these gaps in order to better determine individual QOL for children with rheumatic diseases. METHODS: We generated items from literature review, other QOL measures and interviews with pediatric rheumatology patients and their families. Gap-scales to measure the discrepancy between a child's current state and the expected or desired state were designed and tested iteratively in pilot interviews. RESULTS: Thirty-one children (mean age=13.5 years, age range=6-17 years) and 22 parents were recruited through pediatric rheumatology clinics. The process of item generation, reduction and preliminary formatting yielded a list of 72 items. We developed a 3-point categorical scale of importance and a vertical visual analog scale (VAS) to determine individual valuation of items. 5 gap-scales were developed to reflect different aspects of the discrepancy between the child's current and expected or desired states for different QOL items. CONCLUSIONS: We have developed a QOL interview based on theory that we can now test to see if it will enrich our understanding of the determinants of QOL in pediatric rheumatology patients and other chronically ill children.     

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.     

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.     

Ausbildungssituation in der Kinder- und Jugendrheumatologie �C Ergebnis einer Erhebung

In child and adolescent medicine pediatric rheumatology does not carry great weight. This fact is contrasted by the frequent occurrence of symptoms concerning the musculoskeletal system in childhood and adolescence. The obviously low interest in pediatric rheumatology probably has its roots in the education of undergraduates just as the often delayed diagnosis and inadequate therapy can possibly be credited to the content of specialist's training. The improvement of the educational situation is both concern and task of the German Society for Rheumatology (DGRh) and the German Society for Pediatric and Adolescent Rheumatology (GKJR).     

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.     

Children and Adolescents with Repaired Tetralogy of Fallot Report Quality of Life Similar to Healthy Peers

Objective. The study aims to evaluate and compare self‐reported and parent proxy‐reported quality of life (QOL) in pediatric patients with repaired tetralogy of Fallot (TOF) and determine relationships with residual disease. Design. QOL was prospectively evaluated in children/adolescents with repaired TOF and parents' proxy report using the Pediatric Quality of Life Inventory Generic Core and Cardiac Module scales. The scores were compared with published self and parent proxy‐reported normative data for children considered healthy, chronically ill, and with congenital heart disease. Recent clinical data were reviewed for correlations between QOL and residual disease severity. Results. Twenty child–parent pairs were assessed at median age of 10.9 years (range 8.4–18.7 years). Self‐report was higher than parent proxy report. Compared with peers, self‐reported QOL was higher than for chronically ill children (overall QOL 85 vs. 77, P= 0.007) and similar to healthy children (85 vs. 83, P= 0.44), while proxy report by parent was similar to parents of chronically ill children (overall QOL 77 vs. 74, P= 0.035). Despite moderate pulmonary regurgitation (mean 35%) and right ventricular dilation (mean 114 mL/m²), 76% had a New York Heart Association class of 1, normal B‐natriuretic peptide (24 pg/mL), reasonable exercise tolerance VO₂ max% predicted (mean 77%), and preserved right ventricular ejection fraction (mean 58%, range 44–80%). Overall QOL positively correlated with child's VO₂ max% predicted, when reported by child (r = 0.47, P < 0.05) and parent proxy (r = 0.63, P < 0.05). Conclusions. QOL in children/adolescents with repaired TOF is not proportional to the severity of their residual disease. Self‐reported QOL appears similar to healthy peers while parent proxy reported lower QOL. For both children and parents, QOL positively correlated with the child's exercise capacity. Therefore, comprehensive follow‐up should include cardiac rehabilitation and psychosocial evaluation to ensure an active lifestyle, improve health perception, and prevent later acquired heart disease.     

Parents of children with rheumatic disease as peer counselors

Objective. A parent consultant program was established to promote active family involvement in the health care process and to provide parent-to-parent support, education, and training. Methods. Parents of children with rheumatic disease were hired by 7 pediatric rheumatology centers to serve as role models and advocates for other parents whose children attended the clinics. In the clinic, the parent consultants provided support, advocacy, and education regarding specific nonmedical issues. At the local level, they assisted parents in obtaining community-based services, such as individual educational plans at school, local physical therapy, or access to recreational resources. Results. Program impact was evaluated by an anonymous, mail-response questionnaire sent to parents who met with a parent consultant during a clinic visit for their child. Surveys were sent within 6 months of the initial parent consultant meeting; 257 questionnaires were mailed, 33% were returned. The majority of respondents (87%) felt their interaction with the parent consultant was helpful. The general support received and the specific information and/or assis-tance received were found to be equally useful by respondents. The majority of respondents (98%) stated they would recommend that other parents meet with the parent consultant. Conclusion. Parents of children with rheumatic disease are effective peer counselors, providing general support and specific assistance to enhance family involvement in care.     

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.     

Attitudes of rheumatology practitioners toward transition and transfer from pediatric to adult healthcare

We explored the attitudes of rheumatology practitioners toward the transition and transfer of adolescents with a rheumatic disorder from pediatric to adult healthcare. Rheumatology practitioners attending the Pediatric Rheumatology European Society (PRES) Congress in 2010 were asked to complete the Questionnaire about Attitudes of Rheumatology Practitioners Toward Transfer and Transition (QUARTT), an instrument that was specifically devised for this study. Overall, 138 healthcare professionals participated (response rate, 55.2%). Participants believed that when patients with an active rheumatic disorder reach adulthood, they should receive medical follow-up from an adult rheumatologist (87%). Only 19% thought that patients should remain under the surveillance of a pediatric rheumatologist. Several initiating factors for transfer were marked as important: readiness of the patient according to the caregiver (62%), age (61%), and psychosocial maturity (49%). A transfer meeting with the patient (76%), a referral letter (73%), and a medical transfer file (64%) were the most preferred transfer communication methods. Joint outpatient clinics, phone calls, and transfer meetings without the patient were considered to be less useful. Pediatric (94%) or adult (83%) rheumatologists, parents (81%), and nurse specialists (74%) were stated as the most important active participants in the transition process. Responders favored essential transition components because young people should be assisted on how to become independent (96%), how to deal with fatigue (91%), and how to establish medication adherence (90%). In conclusion, this study emphasized the importance of transfer to specialized rheumatology care of adolescents with an active rheumatic disease and highlighted transfer initiators and transfer communication tools.     

Stress and quality of life among parents of children with congenital heart disease referred for psychological services

Objective

The study examined parent stress and health‐related quality of life (HRQOL) among families of children with congenital heart disease (CHD) referred for psychological services.

Methods

Parents of 54 children (85% boys) aged 3 to 13 (M_age = 7.48, SD = 2.38) completed measures to assess parenting stress (Parenting Stress Index – Short Form; Pediatric Inventory for Parents) and the PedsQL Family Impact Module. Medical information was retrieved from medical record review.

Results

Half of parents of children with single ventricle anatomy had clinically significant levels of parenting stress. Parents of children with single ventricle anatomy reported more frequent illness‐related stress and more difficulty dealing with illness‐related stress than parents of children with two ventricle anatomy. Younger gestational age at birth and referral for attention or behavior problems were associated with greater likelihood of parent at‐risk psychosocial functioning.

Conclusions

Among children referred for psychological services, many parents report significant stress and significant negative impact of the child's medical condition on the family. Results underscore the need to consider assessing parent psychosocial functioning and providing additional support for parents of children with CHD.     

Validation of the Functional Assessment of Chronic Illness Therapy Fatigue Scale relative to other instrumentation in patients with rheumatoid arthritis

OBJECTIVE: This study validated a brief measure of fatigue in rheumatoid arthritis (RA), the Functional Assessment of Chronic Illness Therapy (FACIT) Fatigue Scale. METHODS: The FACIT Fatigue was tested along with measures previously validated in RA: the Multidimensional Assessment of Fatigue (MAF) and Medical Outcomes Study Short-Form 36 (SF-36) Vitality. The sample included 636 patients with RA enrolled in a 24 week double blind, randomized clinical trial (RCT) of adalimumab versus placebo. RESULTS: The FACIT Fatigue showed good internal consistency (alpha = 0.86 to 0.87), strong association with SF-36 Vitality (r = 0.73 to 0.84) and MAF (r = -0.84 to -0.88), and the ability to differentiate patients according to clinical change using the American College of Rheumatology (ACR) response criteria (ACR 20/50/70). Psychometric performance of the FACIT Fatigue scale was comparable to that of the other 2 fatigue measures. A minimally important difference in FACIT Fatigue change score of 3-4 points was confirmed in a separate sample of 271 patients with RA enrolled in a second double blind RCT of adalimumab versus placebo. CONCLUSION: The FACIT Fatigue is a brief, valid measure for monitoring this important symptom and its effects on patients with RA.