Michael A. Rapoff

The PedsQL™ in Pediatric Asthma: Reliability and Validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Asthma Module

The PedsQL™ is a modular instrument designed to measure health-related quality of life (HRQOL) in children and adolescents ages 2–18. The PedsQL™ 4.0 Generic Core Scales were developed to be integrated with the PedsQL™ Disease-Specific Modules. The PedsQL™ 3.0 Asthma Module was designed to measure pediatric asthma-specific HRQOL. The PedsQL™ was administered to 529 families. Internal consistency reliability was demonstrated for the PedsQL™ 4.0 Total Score (α = 0.90 child, 0.91 parent report) and Asthma Module (average α = 0.71 child, 0.86 parent report). The PedsQL™ 4.0 distinguished between healthy children and children with asthma. The validity of the PedsQL™ Asthma Module was demonstrated through intercorrelations with a previously standardized asthma disease- specific instrument. Responsiveness was demonstrated through patient change over time as a result of clinical intervention. The results demonstrate the reliability, validity, and responsiveness of the PedsQL™ required for an outcome measure in pediatric asthma clinical trials and research.

Psychosocial factors in chronic spinal cord injury pain

&NA; Chronic pain is a problem among patients with spinal cord injuries, but the psychosocial factors associated with spinal cord injury (SCI) pain are not well understood. To understand SCI pain further, 54 patients (19 with quadriplegia and 35 with paraplegia) completed the Beck Depression Inventory, State‐Trait Anxiety Inventory, Profile of Mood States, Acceptance of Disability Scale and SCI Interference Scale. Forty‐two patients stated they had SCI pain and completed the Multidimensional Pain Inventory and the Pain Experience Scale. Results revealed that anger and negative cognitions were associated with greater pain severity. Patients who reported pain in response to a general prompt experienced more severe pain than patients who reported pain only when directly questioned about the presence of pain, but these different reporting groups did not differ on emotional variables. Those who were less accepting of their disability reported greater pain severity. Additionally, patients who perceived a significant other expressing punishing responses (e.g., expressing anger at the patients or ignoring the patients) to their pain behaviors reported more severe pain. Level of lesion, completeness of injury, surgical fusion and/or instrumentation and veteran status were not associated with pain severity. Finally, pain was associated with emotional distress over and above the distress associated with the SCI itself. Overall, psychosocial factors, not physiological factors, were most closely associated with the experience of pain. Multidimensional aspects of pain are used to explain these findings and suggest that treatment should be directed at the emotional and cognitive sequelae of chronic SCI pain.

Chronic pain and emotional distress in children and adolescents

Pediatric chronic pain continues to be relatively underinvestigated and undertreated. The objective of the present cross-sectional study was to investigate the emotional distress hypothesized to be concurrently associated with the chronic pain experience in children and adolescents. One hundred and sixty children and adolescents with chronic pain and their parents completed standardized assessment instruments measuring pain intensity, depressive symptoms, state anxiety, trait anxiety, general self-esteem, and internalizing and externalizing behavior problems. Consistent with the a priori Biobehavioral Model of Pediatric Pain, higher patient-perceived pain intensity was associated with higher depressive and anxious symptoms, lower general self-esteem, and higher behavior problems. The results are discussed in regard to preventing and treating pain and suffering in children and adolescents with chronic pain. J Dev Behav Pediatr 17:154–161, 1996. Index terms: pain, children, adolescents, distress, adjustment, arthritis.

Development of the Waldron/Varni Pediatric Pain Coping Inventory.

&NA; The standardized assessment of pediatric pain coping strategies may substantively contribute to the conceptual understanding of individual differences in pediatric pain perception and report. The Waldron/Varni Pediatric Pain Coping Inventory (PPCI) was developed to be a standardized questionnaire to assess systematically childrens pain coping strategies. The PPCI was administered to 187 children and adolescents experiencing musculoskeletal pain associated with rheumatologic diseases. A principal components analysis revealed a five‐factor solution for the PPCI: (1) cognitive self‐instruction, (2) seek social support, (3) strive to rest and be alone, (4) cognitive refocusing, and (5) problem‐solving self‐efficacy. The results of this research provide initial evidence that the PPCI is a conceptually valid and internally reliable measure for assessing pediatric pain coping strategies.

The Efficacy of Adherence Interventions for Chronically Ill Children: A Meta-Analytic Review

OBJECTIVES To provide quantitative information about the overall effectiveness of adherence interventions to improve adherence and health outcomes for children with chronic illnesses. To evaluate statistically the potential moderators. METHODS A meta-analysis was performed on 71 adherence intervention studies. RESULTS Weighted-mean effect size (ES) across all the adherence outcomes for group design studies was in the medium range (mean d = 0.58) and for single-subject design studies was in the large range (mean d = 1.44). The weighted mean ES across all health outcome measures for studies using group designs was in the medium range (mean d = 0.40) and for studies using single-subject designs was in the large range (mean d = 0.74). CONCLUSIONS Adherence interventions for children with chronic illnesses effectively increase adherence and result in some positive health benefits. Intervention and methodological variables had significant impact on ESs. High levels of heterogeneity characterized the data.

Attrition in Randomized Controlled Trials for Pediatric Chronic Conditions

OBJECTIVE To examine attrition variables in randomized controlled trials of cognitive behavioral interventions for children with chronic illnesses. METHODS We examined attrition rates reported on 40 randomized cognitive behavioral interventions published in six pediatric research journals, during the years 2002-2007. Intervention focus was limited to children with a chronic medical condition, such as asthma, obesity, arthritis, diabetes, cancer, sickle cell disease, and cystic fibrosis. RESULTS Mean rate of enrollment refusal was 37% (range 0-75%). Mean attrition rate was 20% (range 0-54%) for initial follow-up and 32% (range 0-59%) for extended follow-up. Of the reviewed articles, 40% included a CONSORT diagram. CONCLUSIONS Strategies that can be used to limit attrition include tailoring recruitment to the study population, providing personalized feedback, maintaining consistent study procedures, providing incentives, and using intensive tracking measures. There is a need for standardized definitions and reporting of attrition rates in randomized cognitive behavioral intervention studies.

Psychosocial Adjustment and the Role of Functional Status for Children with Asthma

This study examined the psychosocial adjustment of children with asthma compared to children with diabetes, with cancer, and healthy children and the role of functional status in psychosocial adjustment. The total sample included 100 children, aged 8-16 years, (mean = 11.5 years), consisting of 48 boys and 52 girls. Children with asthma scored significantly higher on measures of affective adjustment (depression and internalizing behavior), significantly lower on self-esteem, and evidenced significantly greater functional impairment. Children with cancer missed significantly more school days. After controlling for functional status, no significant differences remained in affective adjustment but absences remained significantly higher for the children with cancer.

Effects of perceived stress on pediatric chronic pain

The dearth of theoretically driven research on the predictors of pediatric chronic pain may unwittingly contribute to needless suffering in children and adolescents by underinvestigating a potentially treatable condition. The objective of the present study was to investigate the hypothesized predictive effects of perceived stress on pediatric chronic pain intensity in 148 children and adolescents. Consistent with thea priori Biobehavioral Model of Pediatric Pain, higher perceived stress was predictive of greater pediatric pain intensity. The results are discussed with regard to the implications for cognitive-behavioral pediatric pain treatment.

The relationship of children's hope to pediatric asthma treatment adherence

This study investigated the relationship between hope and adherence to a daily inhaled steroid regimen among 48 asthma patients ages 8–12 years old who participated in a 14 day adherence assessment. Participants completed the Childrens Hope Scale, and parents completed a questionnaire aimed at demographic and disease-related information. Adherence was measured by electronic monitoring of the use of the participants metered-dose inhaler. A multivariate model predicting nonadherence was built, including FEV1 in the first step and childrens hope level in the second step. This model was a significant predictor of adherence (Nagelkerke R 2 = 0.24, p = 0.01). No other demographic or psychosocial variables were significant predictors of adherence. These findings highlight the need to attend to psychosocial predictors of adherence, specifically hope, and may help practitioners target these factors in their efforts to increase adherence among pediatric asthma patients.

Prevention of nonadherence to nonsteroidal anti-inflammatory medications for newly diagnosed patients with juvenile rheumatoid arthritis.

Adherence to medications for chronic pediatric diseases decreases overtime. This randomized controlled trial evaluated a clinic-based, nurse-administered educational and behavioral intervention to prevent the anticipated drop in adherence to nonsteroidal medications among newly diagnosed patients with juvenile rheumatoid arthritis. Thirty-four participants completed the study (mean age = 8.44 years, SD = 3.96), including 19 in the experimental group and 15 in the standard-treatment (education) control group. There were significant group and Group x Time effects for adherence (assessed with an electronic monitor over a 13-month period) favoring the experimental group. In contrast, the groups did not differ significantly in disease activity or functional limitations. Factors that may have prevented detection of differences in these health parameters are dicussed.