Jamie L. Ryan

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.

Concerns, Barriers, and Recommendations to Improve Transition from Pediatric to Adult IBD Care: Perspectives of Patients, Parents, and Health Professionals

Background:The current transition literature is a fragmented assortment of studies examining select subsections of transition stakeholders. Methods:Adolescent/young adult patients with IBD (40% transferred to adult care), parents, and health providers (53.8% adult providers) participated in 1 of 6 focus group interviews focused on concerns and needs surrounding transition to adult care. Data were analyzed through directed content analysis. Results:Transition needs/concerns focused on (1) losing relationships with pediatric providers, (2) perceptions of poorer quality care from adult providers, (3) high parent involvement preventing the development of youth self-management skills, and (4) finances and insurance. Suggestions to improve transition to adult care included the following: (1) meeting alone with adolescents during appointments, (2) providing concrete guidance on how/when to transition responsibility, and (3) increasing accountability for adolescents. Recommendations to improve transfer included the following: (1) providing more information about the transfer process and adult providers, (2) obtaining peer support and mentoring, and (3) setting goals and deadlines for transfer. Conclusions:Inclusion of several stakeholder groups allowed for the identification of commonalities across groups as well as their unique needs and concerns surrounding transition to adult care. Concerns and recommendations by participants should be targeted in future transition program efforts.

Electronic monitoring reveals highly variable adherence patterns in patients prescribed ivacaftor

BACKGROUNDnPrevious studies of CF treatments have shown suboptimal adherence, though little has been reported regarding adherence patterns to ivacaftor. Electronic monitoring (EM) of adherence is considered a gold standard of measurement.nnnMETHODSnAdherence rates by EM were prospectively obtained and patterns over time were analyzed. EM-derived adherence rates were compared to pharmacy refill history and self-report.nnnRESULTSn12 subjects (age 6-48 years; CFTR-G551D mutation) previously prescribed ivacaftor were monitored for a mean of 118 days. Overall adherence by EM was 61% (SD=28%) and decreased over time. Median duration between doses was 16.9 hours (IQR 13.9-24.1 hours) and increased over time. There was no correlation between EM-derived adherence and either refill history (84%, r=0.26, p=0.42) or self-report (100%, r=0.40, p=0.22).nnnCONCLUSIONSnDespite the promising nature of ivacaftor, our data suggest adherence rates are suboptimal and comparable to other prescribed CF therapies, and more commonly used assessments of adherence may be unreliable.

Mental health and parenting characteristics of caregivers of children with spina bifida

INTRODUCTIONnWithin the chronic medical illness literature, associations exist between caring for an affected child and parent mental health. The few studies examining both mothers and fathers provide mixed results. The purpose of this study is to examine associations between caregiver anxiety, depression, and parenting variables in caregivers of youth with SB as these relate to marital status, age, education, household income, work status, and childs severity of SB.nnnOBJECTIVEnThe aim of this study is to examine associations between anxiety, depression, and parenting variables in caregivers of youth with spina bifida and how they relate to demographic and disease variables. Exploratory analyses examined the relationship between participation in support activities and depressive and anxious symptomatology and parenting characteristics.nnnSTUDY DESIGNnEighty-four primary caregivers (49 mothers) of 51 youth with spina bifida completed measures of depressive and anxious symptomology, parenting stress, parent overprotection, and perceived child vulnerability.nnnRESULTSnThere were differences between mothers and fathers on several parenting characteristics; however, these were related more to marital status and employment than to gender of the caretaker per se. In the 33 married/remarried couples for whom both spouses participated, stress for the mothers was correlated with stress for the fathers. This correlation was strongest in the 12 married couples in which the mother works. Higher perceived vulnerability scores were reported in parents of SB patients in the younger age group, especially preschoolers (0-4 years). Parents of children with shunts reported more anxiety, depression and perceived child vulnerability. Both male and female caregivers of younger children reported significantly higher protectiveness scores. Involvement in recreational activities with other families affected by SB was associated with more positive parenting characteristics for mothers.nnnDISCUSSIONnStress and protectiveness were found to be positively correlated (r > 0.6); depression, anxiety, and perceived vulnerability were not (0.3 < r < -0.3). Overall, mothers reported more stress and anxiety than fathers. Higher perceived vulnerability scores were reported in parents of SB patients in the younger age group, especially preschoolers (0-4 years). Parents of children with shunts reported more anxiety, depression and perceived child vulnerability. Both male and female caregivers of younger children reported significantly higher protectiveness scores compared to caregivers of older children. Involvement in recreational activities with other families affected by SB was associated with more positive parenting characteristics for mothers. There were differences between mothers and fathers on several parenting characteristics; however, these were related more to marital status and employment than to gender of the caretaker per se. Limitations to the current study qualify our results and conclusions. Associations do not prove causation. Our measure of parent protection had a lower Cronbachs alpha score for male caregivers (0.68) than female caregivers (0.83), consistent with an examination of the factor structure of the PPS that found the measure to have a poor factor structure and limited reliability in samples with a chronic medical condition.nnnCONCLUSIONnAnxiety, depression, and parenting characteristics were differentially impacted by variables such as caregiver and child age, shunt status, and employment status/income for parents of youth with SB. Interventions to improve parenting skills and mental health of these caregivers can be designed to target specific needs of parents. Groups such as the Greater Oklahoma Disabled Sports Association (GODSA) offer real-world support to improve the lives of caregivers of SB children, and should be studied further to optimize outcomes for children.

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

The impact of effective paediatric adherence promotion interventions: systematic review and meta-analysis.

20,084 (95% confidence interval [CI]

The Relationship of Maternal and Child Illness Uncertainty to Child Depressive Symptomotology: A Mediational Model

16,491–

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

23,677). Charges were higher for patients who reported having seizures since diagnosis (

Topical Review: Theoretical Frameworks in Pediatric Adherence-Promotion Interventions: Research Findings and Methodological Implications

25,509; 95% CI

An examination of the Allocation of Treatment Responsibility scale in adolescents with epilepsy

20,162–