Pediatric Quality of Life Inventory (PedsQL) 3.2 Diabetes Module for youth with Type 2 diabetes: reliability and validity.

AIM: To test the measurement properties of the revised and updated Pediatric Quality of Life Inventory (PedsQL) 3.2 Diabetes Module originally developed in Type 1 diabetes in youth with Type 2 diabetes. METHODS: The PedsQL 3.2 Diabetes Module and PedsQL Generic Core Scales were administered in a field test study to 100 young people aged 9-25 years with Type 2 diabetes. Factor analysis was conducted to determine the factor structure of the items. RESULTS: The 15-item Diabetes Symptoms Summary Score and 12-item Type 2-specific Diabetes Management Summary Score were empirically derived through factor analysis. The Diabetes Symptoms and Type 2-specific Diabetes Management Summary Scores showed acceptable to excellent reliability across the age groups tested (α = 0.85-0.94). The Diabetes Symptoms and Type 2-specific Diabetes Management Summary Scores evidenced construct validity through large effect size correlations with the Generic Core Scales Total Scale Score (r = 0.67 and 0.57, respectively). HbA1c was correlated with the Diabetes Symptoms and Type 2-specific Diabetes Management Summary Scores (r = -0.13 and -0.22). Minimal clinically important difference (MCID) scores were 5.91 and 7.39 for the Diabetes Symptoms and Type 2-specific Diabetes Management Summary Scores. CONCLUSIONS: The PedsQL 3.2 Diabetes Module Diabetes Symptoms Summary Score and Type 2-specific Diabetes Management Summary Score exhibited satisfactory measurement properties for use as youth self-reported diabetes symptoms and diabetes management outcomes for clinical research and clinical practice for young people with Type 2 diabetes.

Prospective, comparative effectiveness trial of cow's milk elimination and swallowed fluticasone for pediatric eosinophilic esophagitis.

Eosinophilic esophagitis (EoE) is a chronic, immune-mediated disease in which food antigens play a key role. Current therapeutic options are limited to long-term steroid medication and dietary elimination of multiple foods, each of which is challenging. Our objective was to compare single food elimination of cow's milk to swallowed fluticasone in pediatric EoE patients. This is a prospective, comparative effectiveness trial of newly diagnosed EoE patients (ages 2-18 years) treated with swallowed fluticasone (n = 24) or elimination of cow's milk (n = 20). The dual outcome measures of repeat esophageal biopsy (6-8 weeks) and change in Pediatric Quality of Life Inventor (PedsQL) EoE Module and Symptoms Scales were used to assess response to treatment. After 6-8 weeks of treatment, peak esophageal eosinophil counts decreased to below the threshold of 15 eosinophils/high-power field in 64% of patients treated with cow's milk elimination and 80% of patients treated with swallowed fluticasone (P = 0.4). Mean PedsQL EoE Module total scores (69 vs. 82; P < 0.005) and Total Symptoms scores (58 vs. 75; P = 0.001) showed significant improvement with cow's milk elimination. Among children treated with swallowed fluticasone, mean PedsQL EoE Module total scores (64 vs. 75; P < 0.05) and Total Symptoms scores (58 vs. 69; P < 0.01) were also significantly improved after 6-8 weeks of therapy. Removal of cow's milk from the diet is an effective single food elimination treatment for pediatric patients with EoE as assessed by statistically significant histologic and symptomatic improvement. Cow's milk elimination may be more desirable for EoE patients who do not want to take chronic, long-term steroid medications.

Quality of life in paediatric eosinophilic oesophagitis: what is important to patients?

BACKGROUND AND AIMS: Current research outcomes in paediatric eosinophilic oesophagitis (EoE) are directed towards histological improvement with no attention to health-related quality of life (HRQOL). The primary objective of this study was to identify key patient-reported and parent proxy outcome elements of EoE disease-specific HRQOL. METHODS: The research team comprised clinical allergists and gastroenterologists with expertise in paediatric EoE as well as two PhD psychologists with extensive experience in qualitative research. Focused interview techniques were adapted from the Pediatric Quality of Life Inventory 4.0™ methodology and the consolidated criteria for reporting qualitative research. A semi-structured interview guide of open-ended questions was developed, and extensive review of audio-taped transcripts was performed. RESULTS: A total of 42 focus interviews were conducted. Child self-reports were obtained for patients in the 5-7, 8-12 and 13-18 years of age groups, and parent proxy reports were obtained in the 2-4, 5-7, 8-12 and 13-18 years of age groups. We discovered that patients and parents often had different concerns, illustrating unique aspects of EoE-specific HRQOL that were not captured in generic HRQOL instruments. Specific themes that emerged from these interviews included, but are not limited to: feelings of being different than family and peers, diet and medication adherence, difficulties with eating food and worry about symptoms and illness. CONCLUSION: Paediatric EoE patient and parent proxy interviews revealed many EoE-specific aspects of HRQOL that are not captured in generic HRQOL instruments. Outcome measures that reflect patient- and parent proxy-reported HRQOL are a critical need in paediatric EoE.

Pediatric health-related quality of life: Feasibility, reliability and validity of the PedsQL transplant module.

The measurement properties of the newly developed Pediatric Quality of Life Inventory (PedsQL) 3.0 Transplant Module in pediatric solid organ transplant recipients were evaluated. Participants included pediatric recipients of liver, kidney, heart and small bowel transplantation who were cared for at seven medical centers across the United States and their parents. Three hundred and thirty-eight parents of children ages 2-18 and 274 children ages 5-18 completed both the PedsQL 4.0 Generic Core Scales and the Transplant Module. Findings suggest that child self-report and parent proxy-report scales on the Transplant Module demonstrated excellent reliability (total scale score for child self-report alpha= 0.93; total scale score for parent proxy-report alpha= 0.94). Transplant-specific symptoms or problems were significantly correlated with lower generic HRQOL, supporting construct validity. Children with solid organ transplants and their parents reported statistically significant lower generic HRQOL than healthy children. Parent and child reports showed moderate to good agreement across the scales. In conclusion, the PedsQL Transplant Module demonstrated excellent initial feasibility, reliability and construct validity in pediatric patients with solid organ transplants.

Health-related quality of life of school-age children with familial Mediterranean fever.

OBJECTIVES: To describe and compare the parent proxy-reported and child self-reported physical and psychosocial HRQOL of school age children who have FMF with healthy peers. METHODS: The Pediatric Quality of Life Inventory 4.0 (Peds QL 4.0) Generic Core Scales was used to measure HR-QOL. Fifty-one patients and 81 healthy peers were enrolled in the study. Patients were grouped according to their ages as : 1) Children (8-12 years) and 2) Adolescents (13-18 years). An accompanying parent completed the parent proxy-report of the Peds QL 4.0. RESULTS: Peds QL scores of children (8-12 years) with FMF were significantly lower than healthy peers for physical and psychosocial functioning for both child self-report and parent proxy-report. The parent proxy-report and child self-reported Peds QL scores of adolescent patients (13-18 years) with FMF were lower than the healthy group for physical, emotional and school functioning; however no significant difference was detected regarding the social functioning. Adolescents with FMF had significantly higher social scores when compared to the younger age group (8-12 years) with FMF, 92.6 +/- 8.5 and 82.2 +/- 17.6, respectively (p=0.028). The scores of physical, emotional and school functioning were similar in both groups (p=0.73, p=0.93, and p=0.028). Correlations among child self-report subscales and proxy-report subscales were all significant and varied from moderate to high. CONCLUSION: This study suggested that assessment of HRQOL has potential clinical implications for the healthcare needs of children and adolescents with FMF. Given the degree of reported impairment in their health-related quality of life, individualized counseling and interventions are needed.

The Italian version of the PedsQL in children with rheumatic diseases.

OBJECTIVE: The aim of the study was to test the reliability and validity of the Italian translation of the PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Rheumatologic Module in a sample of rheumatologic children in Italy. METHODS: The PedsQL 4.0 and the PedsQL 3.0 were administered to rheumatic and healthy children. 102 children 5-18 years old and 132 parents of children 2-18 years old were tested. Additionally, the Child Health Questionnaire - Parent Form 50 - was administered to the rheumatologic sample. RESULTS: Internal consistency reliability for group comparisons reached the recommended coefficient alpha of 0.70 for PedsQL 4.0 and PedsQL 3.0. The inter-correlation between these last ones was highly significant. The correlation between the PedsQL 4.0 and the CHQ was statistically significant. CONCLUSION: The Italian version of the PedsQL 4.0 and PedsQL 3.0 Rheumatology Module demonstrate acceptable reliability and validity for both patient self-report and parent proxy-report.

Family functioning, temperament, and psychologic adaptation in children with congenital or acquired limb deficiencies.

Family functioning and child temperament variables were investigated as predictors of psychologic and social adaptation in 42 children with congenital or acquired limb deficiencies. Higher psychologic and social adaptation were seen when there was more family cohesion and moral-religious emphasis and organization, in combination with less family conflict. With regard to child temperament, more emotionality predicted greater internalizing and externalizing behavior problems and less social competence. In addition to the main effects of the family functioning and child temperament predictor variables, the interaction between family cohesion and child emotionality significantly predicted both internalizing and externalizing behavior problems. The findings are discussed in terms of the risk and protective effects of family functioning domains and temperament on the psychologic and social adaptation of children with visible physical handicaps.

Cognitive-behavioral pain management in children with juvenile rheumatoid arthritis.

Decreasing chronic joint pain is a major goal in the management of juvenile rheumatoid arthritis. Cognitive-behavioral self-regulatory techniques were taught to children with juvenile rheumatoid arthritis to reduce musculoskeletal pain intensity and to facilitate better adaptive functioning. Subjects were 13 children between the ages of 4.5 and 16.9 years who had pauciarticular or systemic onset juvenile rheumatoid arthritis. Baseline data included an initial comprehensive assessment of pain, disease activity, and level of functional disability, as well as pain intensity ratings gathered over a 4-week period. Subjects were seen for eight individual sessions in which self-regulatory techniques (progressive muscle relaxation, guided imagery, meditative breathing) were taught, and parents were seen for two sessions in which key aspects of behavioral pain management techniques were reviewed. Results indicated that these techniques led to substantial reduction of pain intensity, which generalized to outside the clinic setting. Six- and 12-month follow-up data showed consistent decreases in pain as well as improved adaptive functioning. The data suggest that cognitive-behavioral interventions for pain are an effective adjunct to standard pharmacologic interventions for pain in patients with juvenile rheumatoid arthritis.

Evaluation and management of pain in children with rheumatic diseases.

The evaluation and management of pain in children with rheumatic diseases are still in the early stages of empirical development. Nevertheless, with the advent of the PPQ, systematic research efforts are now underway to develop the reliability and validity of the PPQ's measurement characteristics for pediatric rheumatic diseases. With these developments, the inclusion of pediatric pain measurement as an essential outcome variable in controlled clinical trials should be advocated. The major points to be advocated by professionals who care for these children are (1) Children can accurately report their pain when age-appropriate measures are used; (2) pharmacologic treatment is not a sufficient condition for adequate pain management; (3) cognitive-behavior therapy techniques can facilitate children's coping with "breakthrough" recurrent musculoskeletal pain with no known side effects; and (4) adequate pain control should be viewed as a quality assurance issue, considered as another indicator of the adequacy of pediatric health care.

Behavior therapy techniques in treatment of exfoliative dermatitis.

We report here a case study in which behavior therapy techniques were used to treat the persistent and severe scratching of a patient with long-standing exfoliative dermatitis. A multiple-baseline clinical design across different body areas was used to evaluate the behavioral treatment program. This program consisted of (1) training the patient to monitor his scratching behavior and to use an incompatible response and distraction procedure contingent on the occurrence of scratching, and (2) differential attention by the therapist, so that the therapist's attention was contingent on intervals of nonscratching, and the therapist ignored the patient when he did scratch. The results indicated that the program was effective in almost completely eliminating scratching when a variety of therapists were and were not present. This suggests that the procedures used might easily be taught to the nursing staff.

Mediating effects of family social support on child psychological adjustment in juvenile rheumatoid arthritis.

This study assessed the mediating effects of social support on psychological adjustment in children having to cope with the ongoing chronic strain of juvenile rheumatoid arthritis. Disease activity, family social support, and peer social support were entered into hierarchical multiple regression analyses to statistically predict internalizing and externalizing behavior problems. Family social support was a statistically significant predictor of child psychological adjustment for both internalizing and externalizing behavior problems, accounting for 22% of the variance in each. These findings are consistent with the stress-social support-psychological adjustment relationship that has received empirical attention in studies on physically healthy children. The results are discussed in terms of their implications for primary and secondary prevention efforts for those chronically ill and handicapped children who are at increased risk for psychological adjustment problems.

Behavioral approaches to the management of chronic pain in children.

This article focuses on the basic premises underlying the behavioral assessment and treatment of chronic pain, particularly as they apply to the less distinct pain disorders of childhood, such as obscure headache and abdominal pain. Pain behavior management procedures, relaxation techniques, and biofeedback training are discussed in detail in reviewing recent research developments in this area.

Behavior therapy in a gait-training program for a child with myelomeningocele. A case report.

A behavior therapy program consisting of positive reinforcement contingent upon walking with braces and crutches was conducted with a four and one-half-year-old child with myelomeningocele. Behavioral physical therapy was begun first in the clinic setting and then in the home. Follow-up clinic assessments document maintenance of functionally independent ambulation over a seven-month period. The results support the efficacy of using behavioral techniques in a physical therapy program for a child with myelomeningocele. The need for further research and development of physical therapy programs using behavioral techniques is briefly discussed.

Effects of parental adjustment on the adaptation of children with congenital or acquired limb deficiencies.

Maternal and paternal depression, anxiety, and marital discord were investigated as predictors of depression, anxiety, and self-esteem in 54 children with congenital or acquired limb deficiencies. Higher paternal depression predicted higher child depression and higher anxiety. Higher paternal anxiety predicted higher child depression and anxiety and lower self-esteem. Higher marital discord predicted higher child depression and anxiety and lower self-esteem. Maternal depression and anxiety did not predict child psychological adaptation. Family support had a positive effect on child adaptation, as did parent, classmate, teacher, and friend social support. The findings are discussed in terms of the risk and protective effects of parental distress, marital discord, and social support on the psychological adaptation of children with visible chronic physical disorders. J Dev Behav Pediatr 14:13-20, 1993. Index terms: limb deficiencies, children, adjustment, social support, parental distress, family functioning, marital discord.

Correlates of perceived physical appearance in children with congenital/acquired limb deficiencies.

Social support, daily hassles, marital discord, competence/adequacy, and psychological adjustment were investigated as hypothesized correlates of perceived physical appearance in 51 children with congenital or acquired limb deficiencies. Higher classmate, parent, and teacher social support were statistically predictive of higher perceived physical appearance. Higher daily hassles and marital discord were statistically predictive of lower perceived physical appearance. Higher peer acceptance, scholastic competence, and athletic competence were statistically predictive of higher perceived physical appearance. As a group, classmate, parent, and teacher social support, daily hassles, maternal and paternal perceived marital discord, peer acceptance, scholastic and athletic competence accounted for 78% of the variance in perceived physical appearance. Higher perceived physical appearance was in turn statistically predictive of lower depressive and anxious symptoms and higher general self-esteem. The findings are discussed in terms of the potentially modifiable predictors of perceived physical appearance and in terms of the role cosmetic differences play in psychological and social adaptation in children with visible physical handicaps.

Behavior therapy techniques applied to eating, exercise, and diet modification in childhood obesity.

Behavior therapy techniques are receiving increasing attention in the treatment of childhood obesity. This paper provides a selective review of experimental studies of childhood obesity that have utilized behavior therapy techniques with preadolescent populations. It further defines and describes specific behavior therapy techniques utilized in the modification of eating, exercise, and diet patterns in childhood obesity, including stimulus control, stimulus and response generalization, prompting, positive reinforcement, shaping, contingency contracting, and generalization and maintenance strategies.

Psychostimulant medication and perceived intensity in hyperactive children.

Adult ratings of children's activity, based on impressionistic scales, are good indicators of psychostimulant medication effects. These ratings seldom correlate with objective indicators, however, and their behavioral referents are poorly understood. Two separate studies tested the hypothesis that intensity of child behavior, as perceived by others, would differentiate medicated and unmedicated states. College student subjects assessed randomized videotaped segments of children's behaviors. The perceived intensity of hyperactive children's responses decreased with medication. while there were no medication-related changes in either gross motor locomotion of off-task behaviors. In a test for observer sensitization or expectancy, the results for subjects who were looking for medication effects did not differ from those for uninformed subjects.

Perceived social support and adjustment of children with newly diagnosed cancer.

The negative impact on psychologic adjustment from the stress of living with newly diagnosed cancer is hypothesized to be affected by perceived social support. Thirty children with newly diagnosed cancer completed standardized assessment instruments measuring depressive symptoms, state anxiety, trait anxiety, social anxiety, general self-esteem, and perceived social support from classmates, parents, teachers, and friends. Their parents completed a standardized assessment instrument measuring internalizing and externalizing behavior problems. Perceived classmate, parent, and teacher social support were variously correlated with the psychologic adjustment parameters in the hypothesized direction of greater support predicting lower psychologic distress and higher self-esteem. Hierarchical multiple regression analyses identified perceived classmate social support as the most consistent predictor of adaptation, providing further evidence of the essential function of the social environment of the school setting in affecting the adjustment of children with newly diagnosed cancer.

Cognitive functioning in long-term survivors of childhood leukemia: a prospective analysis.

Treatment-related cognitive impairments have been reported for survivors of childhood leukemia following prophylactic central nervous system (CNS) treatment with 2400 cGy craniospinal irradiation and intrathecal chemotherapy. The present study was designed to prospectively evaluate cognitive functioning of 24 children prior to CNS prophylaxis of 1800 cGy of craniospinal irradiation and intrathecal drugs, and at intervals of 1 and 4-5 years. At diagnosis, prior to CNS treatment, all 24 subjects performed in the average range of intelligence, as measured by the Wechsler Intelligence Scales. Subjects continued to perform in the average range with no significant declines at the 1-year follow-up. Significant declines in cognitive functioning, however, were found at the 4- to 5-year follow-up period, with five subjects (21%) performing in the low average or borderline levels of intelligence. Of the 19 subjects performing in the average range, five showed significant discrepancies between Verbal and Performance IQ scores. Nine subjects exhibited poor performance on a subtest cluster assessing perceptual and attentional processes. With regard to school experiences, 50% of the subjects had received some type of special education services. The findings indicate the need for annual evaluations of cognitive functioning in long-term survivors of childhood leukemia who received 1800 cGy craniospinal irradiation, to identify potential cognitive late effects of treatment requiring appropriate special education services.

Determinants of self-esteem in children with congenital/acquired limb deficiencies.

Social support, family functioning, self-perceptions of appearance, school, behavior, athletics, and social competence, as well as daily hassles/microstressors, were investigated as determinants of general self-esteem in 41 children with congenital/acquired limb deficiencies. Classmate, parent, teacher, and friend social support all were significant predictors of self-esteem. Family conflict and organization were also significantly associated with self-esteem, as were microstressors. The overall model of significant predictor variables accounted for 66% of the variance in general self-esteem. General self-esteem also was significantly predictive of depressive symptomatology. The findings suggest a number of factors which are potentially modifiable and which might enhance general self-esteem in children with visible physical handicaps.