Modi, AC; Junger, KF; Mara, CA; Kellermann, T; Barrett, L; Wagner, J; Mucci, GA; Bailey, L; Almane, D; Guilfoyle, SM; Urso, L; Hater, B; Hustzi, H; Smith, G; Herrmann, B; Perry, MS; Zupanc, M; Varni, JW. Validation of the PedsQL Epilepsy Module: A pediatric epilepsy-specific health-related quality of life measure. Epilepsia. 2017; 58(11):388-397.
The development and validation of the PedsQLTM Epilepsy Module used rigorous measurement methodology in 430 youth with epilepsy across five comprehensive epilepsy centers in the United States. Existing pediatric epilepsy-specific health-related quality of life (HRQOL) measures have weaknesses that compromise their clinical utility, including being quite lengthy (48-79 items), lack of parallel caregiver and child-report forms, and lack of inclusion of those with learning/developmental disabilities during instrument development. In contrast, the PedsQL Epilepsy Module is developmentally-sensitive, reliable, and practical across the entire spectrum of children with epilepsy (e.g., typical and atypical development). This HRQOL measure enables healthcare providers to ascertain the impact of epilepsy and its treatments on the daily functioning of youth with epilepsy at point of care, which is now recommended by the American Academy of Neurology as an indicator of quality of care. This allows providers to better hone medical and psychological interventions to optimize HRQOL and reduce epilepsy morbidity. This paper is an example of team science across disciplines (psychologists, neurologists, nurse practitioners, and quantitative experts) and nationally recognized comprehensive epilepsy centers in the U.S.
Stark, LJ; Spear Filigno, S; Bolling, C; Ratcliff, MB; Kichler, JC; Robson, SM; Simon, SL; McCullough, MB; Clifford, LM; Stough, C; Zion, C; Ittenbach, RF. Clinic and Home-Based Behavioral Intervention for Obesity in Preschoolers: A Randomized Trial. The Journal of Pediatrics. 2018; 192:115-121.e1.
This paper presents the results of an randomized control trial comparing an innovative skills-based behavioral family clinic and home-based intervention (LAUNCH) to motivational interviewing and to a standard care to test effectiveness in reducing body mass index z score (BMIz) in preschool-aged children with obesity. LAUNCH participants demonstrated a significantly greater decrease in BMIz compared with motivational and standard care. These results demonstrated that intensive behavioral skills-based interventions is necessary to reduce childhood obesity.
Becker, SP; Sidol, CA; Van Dyk, TR; Epstein, JN; Beebe, DW. Intraindividual variability of sleep/wake patterns in relation to child and adolescent functioning: A systematic review. Sleep Medicine Reviews. 2017; 34:94-121.
This paper, published in Sleep Medicine Reviews, is the first systematic review of intraindividual variability (night-to-night variability) of sleep in children and adolescents. Although it is abundantly clear that sleep plays a crucial role in children’s development and adjustment, most studies focus on overall sleep/wake patterns and ignore daily variations in sleep. The systematic review conducted by Stephen Becker, PhD, and his colleagues suggests that this is a potentially glaring omission in pediatric sleep research and clinical care. They found that implicated aspects of sleep variability in a number of physical and neurodevelopmental conditions such as ADHD and autism. The team also found growing evidence linking sleep variability poorer physical, mental, and cognitive health. However, this is an area in need of more rigorous research that can help researchers and clinicians alike understand the development, prevalence, and impact of sleep variability in youth.
Hommel, KA; McGrady, ME; Peugh, J; Zacur, G; Loreaux, K; Saeed, S; Williams, E; Denson, LA. Longitudinal Patterns of Medication Nonadherence and Associated Health Care Costs. Inflammatory Bowel Diseases. 2017; 23(9):1577-1583.
This study demonstrates longitudinal patterns of greater non-adherence associated with increased health care costs. Additionally, patients who improve their adherence over time exhibit health care costs similar to those who were consistently adherent. These findings suggest that improving treatment adherence can decrease costs in addition to the obvious benefit of improving health outcomes. With the changing health care insurance landscape in the US, cost of care will continue to be a critical factor for treatment considerations and reimbursement. This study highlights the need to target self-management behavior in treatment of chronic conditions in order to reduce costs.
Pai, ALH; Rausch, J; Drake, S; Morrison, CF; Lee, JL; Nelson, A; Tackett, A; Berger, S; Szulczewski, L; Mara, C; Davies, S. Poor Adherence Is Associated with More Infections after Pediatric Hematopoietic Stem Cell Transplant. Biology of Blood and Marrow Transplantation. 2018; 24(2):381-385.
Hematopoietic stem cell transplantation (HSCT) treats a range of life-threatening pediatric diagnoses and characterizes an arduous hospitalization followed by an intensive, complex, and frequently changing outpatient medication regimen that the child and family must manage to prevent post-transplant complications including life-threatening infections and graft-versus-host-disease. Using electronic pill bottles to assess adherence for the first time in the pediatric HSCT, we demonstrated that average adherence at one-month post-discharge was only 63% and fell even lower to 57% at six-months post-discharge. For patients who received an allogeneic transplant, there is an association of lower adherence (p < .005) with higher infection rates, after controlling for age and time since transplant but not for those receiving an autologous transplant. This study demonstrates that poor oral medication adherence is prevalent, persistent and, for patients receiving an allogeneic transplant, associated with increased incidence of infections during the outpatient treatment period. This study clearly demonstrated a critical need for additional research to examine factors that hinder medication adherence as well as to identify best practices for monitoring, promoting, and intervening to maximize medication adherence throughout HSCT course.