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.

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).

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.

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.

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.

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.

Brief report: the association between peer victimization, prosocial support, and treatment adherence in children and adolescents with Inflammatory Bowel Disease.

OBJECTIVE: To examine the relationship between peer victimization, prosocial support, and treatment adherence in children and adolescents with Inflammatory Bowel Disease (IBD). METHOD: Thirty-eight children diagnosed with IBD, between the ages of 7-19 years, and their parents were recruited from an outpatient Gastroenterology Clinic. Each child completed the Social Experience Questionnaire. The child, parent, and treating physician completed a one-item measure of child medication adherence. RESULTS: Child reported positive social interactions moderated the relationship between child reported peer victimization and self-reported medication adherence (t = -2.09; p = .045). These relationships held when parent report of child adherence was substituted for child reported adherence in this model (t = -2.37; p = .024). CONCLUSIONS: The findings from this pilot study suggest that prosocial support may buffer children with IBD from experiencing the more negative effects of peer victimization on treatment adherence and highlight the importance of social interactions in youth with IBD. Implications for treatment are discussed.