Rachelle R. Ramsey

Measures of general pediatric quality of life: Child Health Questionnaire (CHQ), DISABKIDS Chronic Generic Measure (DCGM), KINDL‐R, Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales, and Quality of My Life Questionnaire (QoML)

Purpose. To measure health-related quality of life (HRQOL) in children and adolescents ages 5–18 years. This measure consists of child report (ages 10–18 years) and 2 versions of parent-proxy report (ages 5–18 years) of the child’s HRQOL. It can be used with healthy children and those with both acute and chronic health conditions. Content. Assesses for 14 physical and psychosocial domains: general health perceptions, physical functioning, role/social physical functioning, bodily pain, role/social emotional functioning, role/social behavioral functioning, parent impact-time, parent impact-emotional, self-esteem, mental health, behavior, family activities, family cohesion, and change in health. Number of items. The child-report questionnaire (CHQCF87) consists of 87 items. The long parent-report questionnaire (CHQ-PF50) consists of 50 items, and the short parent-report questionnaire (CHQ-PF28) consists of 28 items. Response options/scale. The response options for the CHQ are ordinal scales that vary by the item. Each item consists of 4–6 response options. Additionally, each scale consists of varying numbers of items. Recall period for items. Varies by subscale. Most scales have a recall period of 4 weeks. The change in health subscale has a recall period of 1 year, and the global health, general health perception, and family cohesion subscales ask about the child’s health “in general.” Endorsements. No information. Examples of use. Apaz MT, Saad-Magalhaes C, Pistorio A, Ravelli A, de Oliveira Sato J, Marcantoni MB, et al, for the Paediatric Rheumatology International Trials Organisation. Health-related quality of life of patients with juvenile dermatomyositis: results from the Paediatric Rheumatology International Trials Organisation multinational quality of life cohort study. Arthritis Rheum 2009; 61:509–17. Brunner HI, Higgins GC, Wiers K, Lapidus SK, Olson JC, Onel K, et al. Health-related quality of life and its relationship to patient disease course in childhoodonset systemic lupus erythematosus. J Rheumatol 2009;36: 1536–45 (1). Gutierrez-Suarez R, Pistorio A, Cespedes Cruz A, Norambuena X, Flato B, Rumba I, et al. Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas: the PRINTO multinational quality of life cohort study. Rheumatology (Oxford) 2007;46:314–20 (2). Oliveira S, Ravelli A, Pistorio A, Castell E, Malattia C, Prieur AM, et al, for the Pediatric Rheumatology International Trials Organization (PRINTO). Proxy-reported healthrelated quality of life of patients with juvenile idiopathic arthritis: the Pediatric Rheumatology International Trials Organization multinational quality of life cohort study. Arthritis Rheum 2007;57:35–43 (3). Ruperto N, Buratti S, Duarte-Salazar C, Pistorio A, Reiff A, Bernstein B, et al. Health-related quality of life in juvenile-onset systemic lupus erythematosus and its relationship to disease activity and damage. Arthritis Rheum 2004; 51:458–64. Selvaag AM, Flato B, Lien G, Sorskaar D, Vinje O, Forre O. Measuring health status in early juvenile idiopathic arthritis: determinants and responsiveness of the Child Health Questionnaire. J Rheumatol 2003;30:1602–10 (4). Takken T, Elst E, Spermon N, Helders PJ, Prakken AB, van der Net J. The physiological and physical determinants of functional ability measures in children with juvenile dermatomyositis. J Rheumatol 2002;42:591–5. Stephanie E. Hullmann, MS, Jamie L. Ryan, MS, Rachelle R. Ramsey, MS, John M. Chaney, PhD, and Larry L. Mullins, PhD: Oklahoma State University, Stillwater. Address correspondence to Stephanie E. Hullmann, MS, Oklahoma State University, 116 North Murray Hall, Stillwater, OK 74078. E-mail: stephanie.hullmann@okstate.edu. Submitted for publication January 23, 2011; accepted in revised form May 10, 2011. Arthritis Care & Research Vol. 63, No. S11, November 2011, pp S420–S430 DOI 10.1002/acr.20637

Treatment Adherence in Patients With Headache: A Systematic Review

To review and critically evaluate the extant research literature pertaining to adherence in youth and adults with headache and to provide recommendations for future research.

Convergent validity of the Child Behavior Checklist sleep items with validated sleep measures and sleep disorder diagnoses in children and adolescents referred to a sleep disorders center.

OBJECTIVE The Child Behavior Checklist (CBCL) is a commonly used measure of child and adolescent functioning, and a handful of items from the CBCL are often used to measure sleep functioning. The objective of this study was to examine the convergent, discriminant, and external validity of the individual CBCL sleep items and a CBCL sleep composite with validated measures of sleep functioning and youth adjustment as well as sleep disorder diagnoses. METHODS The participants were 383 youths (ages 6-18 years; 52.5% male; 80% non-Hispanic White) evaluated in a behavioral sleep medicine clinic. A sleep psychologist diagnosed sleep disorders following a comprehensive evaluation. Parents completed the CBCL in addition to the Childrens Sleep Habits Questionnaire (CSHQ) and the Sleep Disorders Inventory for Students (SDIS). Adolescents completed the Adolescent Sleep-Wake Scale (ASWS). RESULTS Individual CBCL sleep items were generally associated with sleep scales on validated sleep measures and with sleep disorder diagnoses. The CBCL sleep composite was associated with total scores on each of the sleep-specific measures, as well as with the CBCL attention, social, internalizing, and externalizing problems scales. CONCLUSIONS Although the CBCL is inadequate for thoroughly assessing sleep problems and disorders, sleep items on the CBCL may be useful in epidemiological/archival studies that lack a more comprehensive sleep measure or to clinicians who do not use other validated sleep measures in their typical practice. Individual CBCL sleep items may be optimal when assessing specific facets of sleep functioning whereas the CBCL sleep composite may be optimal when examining overall sleep functioning and external correlates of sleep.

On Muddled Reasoning and Mediation Modeling

The hope of mediation modeling is that psychologists can go beyond tests of association to truly uncover mechanisms of change. We argue this hope can be realized only if psychologists make important distinctions regarding causality and inference. From the perspective of Aristotelian philosophy, mediation models are sequences of efficient causes, and psychologists should therefore seek to identify those persons who can be traced through the entire sequence successfully. By reanalyzing data from two mediation studies we demonstrate that contemporary, aggregate methods of analysis are not suitable for this task because they are instead focused on making inferences about population parameters. In both studies alternative, person-centered methods revealed that majorities of participants were not traceable through the statistically significant mediation models.

A longitudinal examination of the parent–child distress relationship in children with juvenile rheumatic disease.

OBJECTIVE To examine the longitudinal relationships between parent and child distress in a sample of children with juvenile rheumatic diseases (JRDs). DESIGN Cross-lagged panel correlation analysis tested the temporal precedence of parent distress versus child distress over a 1-year period. PARTICIPANTS Thirty-seven children (ages 9-17 years; 22 girls) diagnosed with JRD and their parents completed self-report measures on 2 occasions (assessment interval M = 12 months). PRIMARY OUTCOME MEASURES Child Depression Inventory and Brief Symptom Inventory. RESULTS Significant cross-sectional parent-child distress associations were observed at both time points. Moreover, Time 1 parent distress predicted child distress at Time 2 after child-reported functional ability was controlled; Time 1 child distress was unrelated to Time 2 parent distress. Cross-lagged panel correlations demonstrated the temporal precedence of parent distress relative to child distress in the parent-child distress relationship. CONCLUSIONS These preliminary findings underscore the importance of parent distress in parent-child transactional adjustment, and suggest a predominant role for parent distress in childrens adjustment to JRDs.

The association of illness uncertainty to parent and youth adjustment in juvenile rheumatic diseases: effect of youth age.

Objective: This study sought to examine the differential effect of youth age on the association between parental uncertainty and both parent distress and youth depressive symptoms within the context of juvenile rheumatic disease. Method: The sample comprised 51 youth aged 9 to 17 years diagnosed with a juvenile rheumatic disease and their parents. Youth completed a measure of depressive symptoms (i.e., Childrens Depression Inventory); parents completed measures of illness uncertainty (i.e., Parental Perceptions of Uncertainty Scale) and parental distress (i.e., Brief Symptom Inventory). Results: Parental uncertainty demonstrated a significant main effect on both parent distress and youth depressive symptoms. However, these main effects were qualified by significant parental uncertainty × youth age interactions. Parental uncertainty was significantly related to parent distress for both younger and older youth but was only significantly related to youth depressive symptoms in the sample of older youth. Conclusion: Parental uncertainty due to illness seems to be more predictive of both parent and youth distress with increasing youth age. These findings indicate that the impact of parental illness uncertainty on adjustment outcomes is pronounced as children transition into developmental periods of increasing autonomy and independence.

Parent Perceptions of Illness Uncertainty and Child Depressive Symptoms in Juvenile Rheumatic Diseases: Examining Caregiver Demand and Parent Distress as Mediators

OBJECTIVE Examine caregiver demand and general parent distress as mediators in the parent illness uncertainty-child depressive symptom association in youth with juvenile rheumatic diseases. METHODS Children and adolescents completed the Child Depression Inventory; caregivers completed the Parent Perceptions of Uncertainty Scale, the Care for My Child with Rheumatic Disease Scale, and the Brief Symptom Inventory. The pediatric rheumatologist provided ratings of clinical disease status. RESULTS Analyses revealed significant direct associations between illness uncertainty and caregiver demand, and between caregiver demand and both parent distress and child depressive symptoms. Results also revealed significant parent uncertainty → caregiver demand → parent distress and parent uncertainty → caregiver demand → child depressive symptom indirect paths. CONCLUSIONS Results highlight the role of illness appraisals in adjustment to juvenile rheumatic diseases, and provide preliminary evidence that parent appraisals of illness uncertainty impact parent distress and child depressive symptoms indirectly through increased perceptions of caregiver demand.

Predictors of trajectories of epilepsy-specific quality of life among children newly diagnosed with epilepsy

OBJECTIVE The objective of this study was to identify two-year trajectories of epilepsy-specific health-related quality of life (HRQOL) among children newly diagnosed with epilepsy and to evaluate the predictive value of a comprehensive set of medical, psychosocial, and family factors. METHODS Ninety-four children with epilepsy (8.14 ± 2.37 years of age and 63% male) and their caregivers participated in this study. Caregivers completed the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE) and measures of psychological and family functioning at one month postdiagnosis. The QOLCE was also given at eight additional time points during the subsequent two years as a part of a large observational study in children with epilepsy. Adherence data were collected via MEMS TrackCaps, and medical information was collected through chart review. RESULTS Unique trajectories were identified for the overall QOLCE scale, as well as the subscales. Most trajectory models for the QOLCE subscales contained at least one at-risk trajectory for children, indicating that there is a subgroup of children experiencing poor long-term HRQOL. Health-related quality-of-life trajectories remained predominantly stable during the two-year period following treatment initiation. The number of AEDs, internalizing problems, and externalizing problems emerged as the most consistent predictors across the HRQOL domains. SIGNIFICANCE Medical and psychosocial interventions, such as cognitive-behavioral strategies, should target modifiable factors (e.g., internalizing symptoms, externalizing symptoms, number of AEDs trialed) shortly after diagnosis to improve HRQOL for children with epilepsy over the course of their disease.

Adherence to Biobehavioral Recommendations in Pediatric Migraine as Measured by Electronic Monitoring: The Adherence in Migraine (AIM) Study

The purpose of this investigation was to examine treatment adherence to medication and lifestyle recommendations among pediatric migraine patients using electronic monitoring systems.

Trajectories of Health-Related Quality of Life Among Children With Newly Diagnosed Epilepsy

OBJECTIVE To identify two-year trajectories of health-related quality of life (HRQOL) among children with newly diagnosed epilepsy, and evaluate key predictors of HRQOL trajectories. METHODS This study is part of a prospective study of adherence and HRQOL outcomes in children with epilepsy. Caregivers completed an HRQOL questionnaire at one month post diagnosis and every three months thereafter for two years. Chart review and additional questionnaires were used to collect medical variables and seizure outcomes. RESULTS Participants included 120 children with epilepsy and their caregiver. Unique trajectories for overall HRQOL and PedsQL™ subscales were identified and were predominantly stable. A total side effects score emerged as a consistent predictor of all HRQOL domains. Other variables (i.e., socioeconomic status, seizures, internalizing and externalizing problems) uniquely predicted HRQOL domains. CONCLUSIONS Medical and psychosocial interventions should be implemented soon after treatment initiation to target modifiable factors (e.g., side effects, anxiety symptoms), which could improve HRQOL.