Key predictors of epilepsy-specific health-related quality of life (HRQOL) in youth with epilepsy.

PURPOSE: Epilepsy-specific health-related quality of life (HRQOL) is an important outcome in youth with epilepsy (YWE). The PedsQL™ Epilepsy Module is the only caregiver-proxy and youth self-report epilepsy-specific HRQOL measure that can be used with youth 2-25 years. Multiple factors affect HRQOL, including epilepsy-specific characteristics, comorbid mental and behavioral health concerns, as well as sociodemographic factors. However, we have not yet examined the cumulative impact of these factors on epilepsy-specific HRQOL in YWE using the PedsQL™ Epilepsy module. METHOD: Youth with epilepsy (n = 281) and their caregivers completed questionnaires focused on sociodemographic factors (e.g., youth biological sex and age), mood/anxiety and behavior symptoms (i.e., Behavioral Assessment Scale for Children - Second Edition; BASC-2, Parent Rating Scale), epilepsy characteristics [e.g., seizure frequency, number of anti-seizure medications (ASMs), ASM side effects, and years since diagnosis], and the PedsQL™ Epilepsy module (subscales: Impact, Cognitive Functioning, Executive Functioning, Sleep, and Mood/Behavior). RESULTS: Hierarchical linear regressions were conducted to examine caregiver-proxy and youth self-reported factors that affect epilepsy-specific HRQOL. Results indicate the strongest key shared predictors of HRQOL in YWE, for both youth and caregiver informants, were mental and behavioral health symptoms. For instance, caregiver-proxy report of YWE HRQOL indicated BASC-2 Externalizing (p < 0.05), Behavioral Symptoms (p < 0.01), and Adaptive Skills (p < 0.001) explained 58 % of the variance in youth Cognitive Functioning HRQOL, while youth self-report of HRQOL indicated that BASC-2 Externalizing (p < 0.01), Behavioral Symptoms (p < 0.05), and Adaptive Skills (p < 0.001) contributed only 36 % of the variance in Cognitive Functioning HRQOL above and beyond the variance explained by sociodemographic and epilepsy-specific characteristics. Similar results were noted for Executive Functioning HRQOL domain, wherein caregiver-proxy report of YWE HRQOL indicated BASC-2 Internalizing (p < 0.01), Behavioral Symptoms (p < 0.001) and Adaptive Skills (p < 0.001) explained 65 % of variance in Executive Functioning, whereas youth self-report of Executive Functioning HRQOL indicated that caregiver-proxy BASC-2 Internalizing (p < 0.001) and Behavioral Symptoms (p < 0.01) explained 34 % of the variance in Executive Functioning HRQOL, above and beyond the variance explained by sociodemographic and epilepsy-specific characteristics. Unique mental and behavioral health predictors of YWE HRQOL were also found for both caregiver-proxy and youth self-report. CONCLUSIONS: Given the integral role of mental and behavioral health symptoms in epilepsy-specific HRQOL, it is critical to address mental and behavioral health symptoms preventatively and proactively to provide YWE with the most optimal health plan, including good seizure control, minimal ASM side effects, and the best possible HRQOL.

Key predictors of the need for a family-focused pediatric epilepsy adherence intervention.

OBJECTIVE: Nonadherence to antiseizure drugs is a significant problem in pediatric epilepsy and is linked to increased morbidity and mortality, clinically unnecessary medication changes, and increased health care costs. Family interventions can improve adherence. However, it is challenging to determine which families will struggle with nonadherence and require intervention. This study aims to identify specific parent, family, child, and medical factors that predict which families most need family-based adherence interventions. METHODS: Families enrolled in a randomized clinical trial of a family-based adherence intervention completed measures assessing parent, family, child, and medical factors. Families also used an electronic adherence monitor. Adherence of ≥95% was considered high adherence (not requiring intervention), and <95% was considered suboptimal adherence (requiring intervention). We conducted a stepwise logistic regression analysis to assess demographic, medical, child, family, and parent predictors of membership to the suboptimal adherence group. RESULTS: Of the 200 families of children with new onset epilepsy who enrolled, 177 families completed the study. Of these families, 121 (68%) were in the high adherence group and 56 (32%) were in the suboptimal adherence group. Families with lower socioeconomic status (SES), children of color, lower general family functioning, and more parent distress were more likely to be in the suboptimal adherence group. SIGNIFICANCE: We identified that parent and family factors, as well as sociodemographic characteristics, predicted membership in the suboptimal adherence group. It is critical to find creative and practical solutions for assessing and intervening upon key adherence predictors. These may include streamlined screening for parental distress and family functioning, as well as recognition that families of lower SES and communities of color may be at heightened risk for suboptimal adherence.

PedsQL™ Cognitive Functioning Scale in youth with epilepsy: Reliability and validity.

OBJECTIVE: The objective of the study was to report on the internal consistency reliability and discriminant, concurrent and construct validity of the Pediatric Quality of Life Inventory™ (PedsQL™) Cognitive Functioning Scale as a brief generic cognitive functioning measure in youth with epilepsy. METHODS: The 6-item PedsQL™ Cognitive Functioning Scale and 23-item PedsQL™ 4.0 Generic Core Scales were completed by 221 pediatric patients ages 5-18 years with epilepsy and 336 parents of patients ages 2-18 years in a national field test study for the PedsQL™ Epilepsy Module. Parents also completed the 86-item Behavior Rating Inventory of Executive Function (BRIEF), a widely validated measure of executive functioning. RESULTS: The PedsQL™ Cognitive Functioning Scale evidenced excellent reliability (patient self-report α = 0.88; parent proxy-report α = 0.96), distinguished between youth with epilepsy and an age, gender, and race/ethnicity-matched healthy sample supporting discriminant validity with large effect sizes (~20-30 point score differences, P < 0.001), and demonstrated concurrent and construct validity, respectively, through large effect size intercorrelations with the BRIEF (Behavioral Regulation Index, Metacognition Index, Global Executive Composite Summary Scores rs = 0.43-0.67, P < 0.001) and the PedsQL™ Generic Core Scales (Total Scale Scores rs = 0.67-0.74, P < 0.001). Minimal clinically important difference (MCID) scores ranged from 5.92 to 8.80. CONCLUSIONS: The PedsQL™ Cognitive Functioning Scale demonstrated excellent internal consistency reliability, discriminant, concurrent, and construct validity in youth with epilepsy and may be suitable as a brief generic patient-reported outcome (PRO) measure for clinical research, clinical trials, and routine clinical practice in pediatric epilepsy.

Current behavioral health and cognitive screening practices in pediatric epilepsy.

PURPOSE: Initiatives such as the Epilepsy Learning Healthcare System continue to advocate for standardized care and shared outcome data. Therefore, the current project aim was to gather information from epilepsy healthcare professionals, behavioral health professionals in particular, regarding their behavioral health and cognitive screening practices in pediatric patients with epilepsy. Information obtained will be used to assist in the development of new educational programs and platforms in the American Epilepsy Society (AES) and to inform the development of guidelines for behavioral healthcare of patients with pediatric epilepsy. SURVEY INFORMATION: Twenty-five AES members representing 25 unique epilepsy programs across the United States participated in the survey. Findings are described in terms of three focus areas: (1) Systems, (2) Assessment, and (3) Intervention. Over 80% of respondents surveyed reported that they do conduct formal screenings, most commonly to determine if further evaluation is indicated (81%), inform treatment decisions (57.1%), and for developmental surveillance (33.3%). Assessment methods were fairly evenly split between nonstandardized informal questions (50%) and evidence-based broadband measures, with the Behavior Assessment System for Children (BASC), 2nd or 3rd Editions (40%) most commonly used. If behavioral health concerns are identified, referrals are often made for psychotherapy (48% in-house; 80% community-based), psychiatry (68% in-house; 48% community-based), and cognitive testing (88% neuropsychological testing; 36% for psychoeducational testing). Thirty-two percent refer for psychotropic medication management. CONCLUSION: According to this survey, a number of epilepsy centers and clinics incorporate behavioral health screening; however, there is significant variability in assessments/measures used, who is administering them, and their purpose in the trajectory of treatment. These findings emphasize the need for standardization across centers in order to most effectively provide comprehensive care for youth with epilepsy.

Establishing clinical cutoffs for the PedsQL™ Epilepsy Module.

OBJECTIVE: The purpose of the present study was to establish clinical cutoffs for the PedsQL Epilepsy Module scales by dichotomizing scores into normative or impaired. We predicted that these cutoffs would be useful in identifying children at greater risk for impairments in health-related quality of life (HRQOL) including those who exhibit effects of ongoing seizures, antiepileptic drugs (AEDs), and polytherapy. METHODS: Two hundred and thirty-seven youth (2-18 years old) and their caregivers were recruited from five tertiary care hospitals across the United States. Caregivers and youth (5 years and older) completed the parent- or self-report versions of the PedsQL Epilepsy Module. Caregivers also completed measures of behavior and mood, AED side effects, and executive functioning in children. Clinical cutoffs were calculated in two ways: anchor-based (receiver operating characteristic (ROC) curve) and distribution-based (0.5 standard deviation (SD)). Medical characteristics were abstracted from the medical chart. t-Tests and chi-square tests were used to determine whether children's HRQOL classified as normative or impaired in epilepsy quality of life differed on seizure freedom, AED side effects, and polytherapy. RESULTS: The final clinical cutoffs were as follows for each PedsQL Epilepsy Module subscale (caregiver and child): Impact (Parent = 60.7; Child = 64.39), Cognitive (Parent = 38.11; Child = 50.97), Executive Functioning (Parent = 46.65; Child = 57.15), Sleep (Parent = 42.07; Child = 43.90), and Mood/Behavior (Parent = 54.14; Child = 53.30). Youth with more severe AED side effects, ongoing seizures, and/or on polytherapy were more likely to have impaired quality of life across domains. CONCLUSION: Clinical cutoffs extend this instrument's utility in surveilling common psychosocial comorbidities, tracking changes in functioning over time, and informing clinical decision-making in youth with epilepsy including recommendations for additional assessment and intervention by a range of health providers serving youth with epilepsy (YWE).

Vulnerabilities to antiepileptic drug (AED) side effects in youth with epilepsy.

OBJECTIVE: The objective of the study was to investigate the relationship between sociodemographic, seizure-related, behavioral health, and antiepileptic drug (AED) adverse effect variables. The aim of this study was to examine whether there were significant differences on AED adverse effects between youth with normative and subclinical/clinical depressive and/or anxiety symptoms. METHODS: As part of a larger multisite validation study, 231 youth age 5 to 18 years diagnosed with epilepsy and their caregivers were recruited to participate for the current study. Youth ages 8 and older and caregivers of all youth completed the Behavior Assessment System for Children-2 (BASC-2). Caregivers also completed the Pediatric Epilepsy Side Effects Questionnaire (PESQ) and a Background Questionnaire. Medical chart review provided information regarding epilepsy diagnosis and treatment. RESULTS: No differences were observed in the mean scores on AED adverse effects between the group with subclinical/clinical BASC-2 Depressive symptoms and those with average/low depressive symptoms. In contrast, the proportion of youth with subclinical/clinical versus average/low depressive symptoms via caregiver report was significantly different for the cognitive, behavioral, general neurological, and total scale of the PESQ. There was also a larger proportion of youth with self-reported subclinical/clinical depressive symptoms who experienced general neurological adverse effects compared with youth with average/low depressive symptoms who experienced general neurological adverse effects. Findings were consistent for anxiety symptoms. SIGNIFICANCE: Identifying potentially modifiable behavioral health symptoms that exacerbate the expression of AED adverse effects could provide alternative solutions for improved AED tolerability to achieve optimum treatment outcomes.

Quality of life improves with integrated behavioral health services in pediatric new-onset epilepsy.

The current study compared differences in health-related quality of life (HRQOL) between youth with new-onset epilepsy with and without elevated psychological symptoms at time of epilepsy diagnosis within an integrated behavioral health and epilepsy service. Patients received both behavioral health and epilepsy care during clinic visits. A retrospective chart review was conducted between July 2011 and December 2015. Caregivers completed the Behavior Assessment System for Children-2: Parent Rating Scale (BASC-2: PRS) to assess psychological symptoms at the diagnostic visit, along with completing the Pediatric Quality of Life Inventory (PedsQL™ 4.0) at the diagnostic visit and each subsequent epilepsy clinic visit during the first year of treatment. Latent growth curve modeling was used to identify HRQOL changes over the first year of treatment. Health-related quality of life was significantly lower for youth with elevated psychological symptoms at diagnosis and over the first year of treatment compared with those without psychological symptoms. For those with elevated internalizing, inattention, withdrawal, and atypical symptoms at diagnosis, greater HRQOL improvements were detected over the first year of treatment compared with those without elevated psychological symptoms at the diagnostic visit. Within integrated behavioral health and epilepsy routine care, targeted psychological interventions can improve HRQOL over the first year of treatment, particularly for those with premorbid psychological symptoms.

Executive functioning phenotypes in youth with epilepsy.

OBJECTIVE: The objectives of this study were to identify executive functioning (EF) phenotypes in youth with epilepsy and to examine whether phenotypes differ on psychosocial and medical outcomes (i.e., absence/presence of seizures in the past three months), health-related quality of life (HRQOL), and emotional and behavioral functioning. METHODS: Youth 5-18 years with diagnosed epilepsy and caregivers completed a battery of questionnaires as part of a larger national validation of the Pediatric Quality of Life (PedsQL) Epilepsy Module. The primary measure of interest was the Behavior Rating Inventory of Executive Function-Parent Form. Medical chart reviews and demographic data were also collected. Latent class analysis was used to identify EF phenotypes. Chi-square and analyses of covariance (ANCOVA) were conducted to examine EF phenotype group differences on seizure outcomes, HRQOL, and behavioral and emotional functioning. RESULTS: Two-hundred and thirty-seven children with epilepsy (Mage = 11.2 years; 56% female; 60% White: Non-Hispanic; 55% experienced seizures in the past three months) and their caregivers participated. Four EF phenotypes were identified: Group 1 - No EF deficits (45% of sample), Group 2 - Global EF deficits (29% of sample), Group 3 - Behavioral Regulation + Working Memory deficits (8% of sample), and Group 4 - Metacognitive deficits (17% of sample). No significant EF phenotype group differences were found for seizure characteristics. The ANCOVAs indicated significant EF phenotype group differences on HRQOL (parent-reported Impact, Cognitive, Sleep, EF, and Mood/Behavior and child-reported Cognitive, Sleep, EF, and Mood/Behavior subscales; ps < .001) and emotional and behavioral functioning (Externalizing, Internalizing, and Behavioral Symptom Index; ps < .001), with the Global EF deficits (Group 2) and Behavioral Regulation + Working Memory deficits groups (Group 3) demonstrating the greatest level of impairment. CONCLUSION: Phenotypic variability in EF is significantly related to patient-reported outcomes. Interventions addressing EF deficits need to be individualized to a child's particular EF phenotype to achieve optimal outcomes.

Antiepileptic drug behavioral side effects and baseline hyperactivity in children and adolescents with new onset epilepsy.

OBJECTIVE: To examine baseline psychological functioning and antiepileptic drug (AED) behavioral side effects in new onset epilepsy and determine, by age, whether baseline psychological functioning predicts AED behavioral side effects 1 month following AED initiation. METHODS: A retrospective chart review was conducted between July 2011 and December 2014 that included youths with new onset epilepsy. As part of routine interdisciplinary care, caregivers completed the Behavior Assessment System for Children, 2nd Edition: Parent Rating Scale to report on baseline psychological functioning at the diagnostic visit and the Pediatric Epilepsy Side Effects Questionnaire to identify AED behavioral side effects at the 1-month follow-up clinic visit following AED initiation. Children (age = 2-11 years) and adolescents (age = 12-18 years) were examined separately. RESULTS: A total of 380 youths with new onset epilepsy (Mage  = 8.9 ± 4.3 years; 83.4% Caucasian; 34.8% focal epilepsy, 41.1% generalized epilepsy, 23.7% unclassified epilepsy) were included. Seventy percent of youths had at-risk or clinically elevated baseline psychological symptoms. Children had significantly greater AED behavioral side effects (M = 25.08 ± 26.36) compared to adolescents (M = 12.36 ± 17.73), regardless of AED. Valproic acid demonstrated significantly greater behavioral side effects compared to all other AEDs, with the exception of levetiracetam. Higher hyperactivity/impulsivity at baseline significantly predicted higher AED behavioral side effects 1 month after AED initiation in both age groups. SIGNIFICANCE: Younger children seem to be more prone to experience behavioral side effects, and these are likely to be higher if youths with epilepsy have baseline hyperactivity/impulsivity. Baseline psychological screening, specifically hyperactivity, can be used as a precision medicine tool for AED selection.

Validation of the PedsQL Epilepsy Module: A pediatric epilepsy-specific health-related quality of life measure.

OBJECTIVE: To validate a brief and reliable epilepsy-specific, health-related quality of life (HRQOL) measure in children with various seizure types, treatments, and demographic characteristics. METHODS: This national validation study was conducted across five epilepsy centers in the United States. Youth 5-18 years and caregivers of youth 2-18 years diagnosed with epilepsy completed the PedsQL Epilepsy Module and additional questionnaires to establish reliability and validity of the epilepsy-specific HRQOL instrument. Demographic and medical data were collected through chart reviews. Factor analysis was conducted, and internal consistency (Cronbach's alphas), test-retest reliability, and construct validity were assessed. RESULTS: Questionnaires were analyzed from 430 children with epilepsy (Mage = 9.9 years; range 2-18 years; 46% female; 62% white: non-Hispanic; 76% monotherapy, 54% active seizures) and their caregivers. The final PedsQL Epilepsy Module is a 29-item measure with five subscales (i.e., Impact, Cognitive, Sleep, Executive Functioning, and Mood/Behavior) with parallel child and caregiver reports. Internal consistency coefficients ranged from 0.70-0.94. Construct validity and convergence was demonstrated in several ways, including strong relationships with seizure outcomes, antiepileptic drug (AED) side effects, and well-established measures of executive, cognitive, and emotional/behavioral functioning. SIGNIFICANCE: The PedsQL Epilepsy Module is a reliable measure of HRQOL with strong evidence of its validity across the epilepsy spectrum in both clinical and research settings.

Development of the PedsQL™ Epilepsy Module: Focus group and cognitive interviews.

UNLABELLED: Youth with epilepsy have impaired health-related quality of life (HRQOL). Existing epilepsy-specific HRQOL measures are limited by not having parallel self- and parent-proxy versions, having a restricted age range, not being inclusive of children with developmental disabilities, or being too lengthy for use in a clinical setting. Generic HRQOL measures do not adequately capture the idiosyncrasies of epilepsy. The purpose of the present study was to develop items and content validity for the PedsQL™ Epilepsy Module. METHODS: An iterative qualitative process of conducting focus group interviews with families of children with epilepsy, obtaining expert input, and conducting cognitive interviews and debriefing was utilized to develop empirically derived content for the instrument. Eleven health providers with expertise in pediatric epilepsy from across the country provided feedback on the conceptual model and content, including epileptologists, nurse practitioners, social workers, and psychologists. Ten pediatric patients (age 4-16years) with a diagnosis of epilepsy and 11 parents participated in focus groups. Thirteen pediatric patients (age 5-17years) and 17 parents participated in cognitive interviews. RESULTS: Focus groups, expert input, and cognitive debriefing resulted in 6 final domains including restrictions, seizure management, cognitive/executive functioning, social, sleep/fatigue, and mood/behavior. Patient self-report versions ranged from 30 to 33 items and parent proxy-report versions ranged from 26 to 33 items, with the toddler and young child versions having fewer items. CONCLUSIONS: Standardized qualitative methodology was employed to develop the items and content for the novel PedsQL™ Epilepsy Module. The PedsQL™ Epilepsy Module has the potential to enhance clinical decision-making in pediatric epilepsy by capturing and monitoring important patient-identified contributors to HRQOL.

Quality of Life Changes and Health Care Charges Among Youth With Epilepsy.

OBJECTIVE: To examine differences in health care charges following a pediatric epilepsy diagnosis based on changes in health-related quality of life (HRQOL). METHODS: Billing records were obtained for 171 youth [M (SD) age = 8.9 (4.1) years] newly diagnosed with epilepsy. Differences in health care charges among HRQOL groups (stable low, declining, improving, or stable high as determined by PedsQL(™) scores at diagnosis and 12 months after diagnosis) were examined. RESULTS: Patients with persistently low or declining HRQOL incurred higher total health care charges in the year following diagnosis (g = .49, g = .81) than patients with stable high HRQOL after controlling for epilepsy etiology, seizure occurrence, and insurance type. These relationships remained consistent after excluding health care charges for behavioral medicine or neuropsychology services (g = .49, g = .80). CONCLUSIONS: Monitoring HRQOL over time may identify youth with epilepsy at particular risk for higher health care charges.

Health care charges for youth with newly diagnosed epilepsy.

OBJECTIVES: To estimate first-year health care charges for youth with newly diagnosed epilepsy seen within an interdisciplinary pediatric epilepsy team and examine demographic, clinical, and psychosocial predictors of annual charges. METHODS: Retrospective chart review was conducted to extract medical, hospital, and physician billing data from the year following an epilepsy diagnosis for 258 patients (aged 2-18 years) seen in a New Onset Seizure Clinic between July 2011 and December 2012. Descriptive statistics were used to estimate per-patient total first-year charges and health care utilization patterns (e.g., hospitalizations, emergency department visits, outpatient visits). Univariate analyses examined differences in health care charges between demographic, clinical, and psychosocial factors. Predictors of health care charges were examined using hierarchical multiple regression analysis. RESULTS: The estimated per-patient total first-year health care charge was $20,084 (95% confidence interval [CI] $16,491-$23,677). Charges were higher for patients who reported having seizures since diagnosis ($25,509; 95% CI $20,162-$30,856) and were associated with more antiepileptic drug side effects (r = 0.18; 95% CI 0.03-0.32). Controlling for demographic and clinical factors, poorer baseline health-related quality of life was associated with higher per-patient health care charges (B = -445.40; 95% CI -865 to -25). CONCLUSIONS: The economic impact of pediatric epilepsy in the year following diagnosis is substantial. Cost reduction efforts would be optimized by improving seizure control and targeting health-related quality of life, an outcome amenable to behavioral intervention.

The Pediatric Epilepsy Side Effects Questionnaire: Establishing clinically meaningful change.

The present study extends the utility of the Pediatric Epilepsy Side Effects Questionnaire (PESQ) by determining distribution-based minimally clinically important difference (MCID) scores. Participants (N=682) were youth (ages 2-25) with newly diagnosed and chronic epilepsy pooled from research and clinical data in the Comprehensive Epilepsy Center. Caregivers completed the PESQ. Demographic and medical data were extracted from medical chart reviews or via a questionnaire. The MCIDs, which are the standard errors of measurement for each scale, for the entire sample were as follows: Cognitive=4.66, Motor=4.67, Behavior=8.05, General Neurological=7.41, Weight=9.58, and Total Side Effects=3.25. Additionally, MCIDs for patients with new-onset (<12months) epilepsy on monotherapy, new-onset epilepsy on polytherapy, chronic epilepsy on monotherapy (>12months), and chronic epilepsy on polytherapy were calculated. Results from the present study extend the utility of the PESQ by providing clinicians and researchers an enhanced understanding about clinically meaningful changes in side effect profiles across the pediatric epilepsy spectrum. These data can inform clinical decision-making for clinicians and researchers.

Parent and family stress factors predict health-related quality in pediatric patients with new-onset epilepsy.

OBJECTIVE: To examine the influence of parent and family general and epilepsy-related stress on longitudinal generic and epilepsy-specific health-related quality of life (HRQOL) for children with new-onset epilepsy, while controlling for demographic characteristics, disease factors, and antiepileptic drug (AED) adherence. METHODS: This prospective, longitudinal study included 124 children with new-onset epilepsy (mean age 7.2 years, standard deviation [SD] 2.9 years). Parents completed questionnaires on parenting stress, perceived stigma, fears and concerns, and HRQOL at 1, 13, and 25 months after diagnosis. Adherence to AEDs was assessed using electronic monitors. A medical chart review was conducted at each visit to obtain seizure and side effect data. RESULTS: Higher levels of general and epilepsy-specific parent and family stress, fears and concerns, and perceived stigma negatively affected child generic and epilepsy-specific HRQOL, above and beyond disease and demographic factors. General parenting and family stress affected child generic and epilepsy-specific HRQOL more in the first year of disease management than at 2 years after diagnosis. Higher fears and concerns predicted higher epilepsy-specific HRQOL at 13 months postdiagnosis, whereas 2 years postdiagnosis, higher fears and concerns predicted lower epilepsy-specific HRQOL. Several demographic (i.e., age) and disease-related variables (i.e., side effects and AED adherence) influenced child generic and epilepsy-specific HRQOL. Although some findings were consistent across generic and epilepsy-specific HRQOL measures, others were unique. SIGNIFICANCE: Modifiable parent factors (i.e., general and disease-specific parent and family stress, perceived stigma) impact HRQOL for children with new-onset epilepsy differently over the first 2 years postdiagnosis. Psychosocial interventions to improve HRQOL within the first year postdiagnosis should address parenting and family stress, overall coping, and anticipatory guidance on managing epilepsy. Interventions targeting adherence, perceived stigma, and fears and concerns could improve HRQOL. Promoting parent management of stress, fears/concerns, and perceived stigma may lead to improved child HRQOL outcomes. A PowerPoint slide summarizing this article is available for download in the Supporting Information section here.

The clinical utility of health-related quality of life screening in a pediatric inflammatory bowel disease clinic.

BACKGROUND: Adjusting to symptom flares, treatment regimens, and side effects places youth with inflammatory bowel disease (IBD) at increased risk for emotional and behavioral problems and adverse disease outcomes. Implementation of psychosocial screening into clinical practice remains a challenge. This study examines the clinical utility of health-related quality of life (HRQOL) screening in predicting disease outcome and healthcare utilization. METHODS: One hundred twelve youth of 7 to 18 years diagnosed with IBD and their parents. Youth completed standardized measures of HRQOL and depression. Parents completed a proxy report of HRQOL. Pediatric gastroenterologists provided the Physician Global Assessment. Families were recruited from a pediatric gastroenterology clinic. Retrospective chart reviews examined disease outcome and healthcare utilization for 12 months after baseline measurement. RESULTS: Linear regressions, controlling for demographic and disease parameters, revealed that baseline measurement of youth and parent proxy-reported HRQOL predicted the number of IBD-related hospital admissions, gastroenterology clinic visits, emergency department visits, psychology clinic visits, telephone contacts, and pain management referrals over the next 12 months. Disease outcome was not significant. CONCLUSIONS: Lower HRQOL was predictive of increased healthcare utilization among youth with IBD. Regular HRQOL screening may be the impetus to providing better case management and allocating resources based on ongoing care needs and costs. Proactive interventions focused on patients with poor HRQOL may be an efficient approach to saving on healthcare costs and resource utilization.

Associations between actual and perceived weight and psychosocial functioning in children: the importance of child perceptions.

BACKGROUND: Inconsistent relationships between weight and psychosocial functioning may be due to discrepancies between objective measures of weight and children's perceptions of weight. The current study compared the predictive validity of actual versus perceived weight in children to determine which is the strongest predictor of psychosocial functioning. METHODS: Ninety-eight youth (ages 8-17) completed measures of perceived weight and psychosocial functioning (i.e., depressive symptoms, peer victimization, and self-esteem) while attending a well-child visit. Height and weight were obtained from the medical record and used to classify children as healthy weight, overweight, or obese. Actual and perceived weight percentiles were entered simultaneously in regression analyses predicting psychosocial functioning. RESULTS: A disproportionate number of overweight (70%) and obese (40.6%) youth reported a perceived weight in the healthy range (below 85(th) BMI percentile). Perceived weight was predictive of depressive symptoms whereas actual weight was not. No relationship between weight (perceived or actual) was found for peer victimization or self-esteem. CONCLUSIONS: Weight underestimation is common in children, particularly among youth who are overweight and obese. Perceived, but not actual, weight was predictive of depressive symptoms, highlighting the importance of weight perceptions among youth across the weight spectrum.

Treatment outcome research in rural pediatric populations: the challenge of recruitment.

OBJECTIVE: Pediatric treatment outcome research focusing on the physical and mental health of children living in rural areas is limited, despite the immense need. Participant recruitment is a significant barrier faced by pediatric researchers working in rural communities. The purpose of this article is to review challenges recruiting children and families to participate in treatment outcome research and identify effective and innovative procedures to enhance recruitment in rural populations. METHODS: A selected review of the pediatric and adult rural recruitment literature and researchers' experiences are discussed. RESULTS: Challenges to recruitment include researchers being viewed as outsiders by rural community members, population size and density of rural communities, unique aspects of rural culture, and higher rates of poverty and lower educational achievement in rural areas. CONCLUSIONS: Strategies to improve recruitment and recommendations for future recruitment efforts in pediatric psychology treatment outcome research for children and families from rural areas are provided.

The influence of a behavioral weight management program on disordered eating attitudes and behaviors in children with overweight.

BACKGROUND: Behavioral interventions targeting children with overweight have been successful in facilitating weight loss; however, there is concern that these programs produce disordered eating attitudes among youth. OBJECTIVE: The purpose of this research was to determine whether youth with overweight receiving one of two behavioral interventions were more likely to report an increase in disordered eating attitudes over time compared to a waitlist control and to determine psychosocial predictors of eating-disordered attitudes at 6-month follow-up. DESIGN: Participants were randomized to one of two behavioral lifestyle interventions or a waitlist control. Data were collected at baseline, post-treatment, and 6-month follow-up. PARTICIPANTS/SETTING: Participants were 68 youths with overweight, aged 8 to 13 years, and their parent(s) who lived in rural north central Florida. The project ran from January 2006 to January 2008. INTERVENTION: Each treatment condition consisted of 12 group sessions over 16 weeks. MAIN OUTCOME MEASURES: Parents completed a demographic form and the Child Feeding Questionnaire. Children completed the Children's Eating Attitudes Test, Schwartz Peer Victimization Scale, and Children's Body Image Scale. STATISTICAL ANALYSES PERFORMED: Mixed 2×2 analyses of variance were used to examine the effect of treatment on eating attitudes. Hierarchical linear regression was used to assess whether baseline levels of psychosocial variables predicted disordered eating attitudes at follow-up, controlling for baseline eating attitudes and treatment condition. RESULTS: Youth who participated in the behavioral interventions did not report significant increases in disordered eating attitudes over time compared to the waitlist control. Across all conditions, higher levels of body dissatisfaction, peer victimization, parent restrictive feeding practices, and concern for child weight at baseline predicted higher levels of disordered eating attitudes at follow-up. CONCLUSIONS: These findings do not provide evidence that behavioral interventions lead to an increase in unhealthy eating attitudes and behaviors. Future research should examine the effects of incorporating eating disorder prevention in pediatric weight management programs.