Dawn Dore-Stites

Assessment of transition readiness skills and adherence in pediatric liver transplant recipients

Fredericks EM, Dore‐Stites D, Well A, Magee JC, Freed GL, Shieck V, Lopez MJ. Assessment of transition readiness skills and adherence in pediatric liver transplant recipients.
Pediatr Transplantation 2010: 14:944–953.

Transition of pediatric liver transplant recipients to adult care: Patient and parent perspectives

Fredericks EM, Dore‐Stites D, Lopez MJ, Well A, Shieck V, Freed GL, Eder SJ, Magee JC. Transition of pediatric liver transplant recipients to adult care: Patient and parent perspectives.
Pediatr Transplantation 2011: 15: 414–424.

Adherence to immunosuppressants: how can it be improved in adolescent organ transplant recipients?

Purpose of reviewNonadherence among pediatric transplant recipients is prevalent, with rates as high as 75% among adolescents. These rates are alarming given that adherence behavior has the potential to be modified. This review examines evidence from recent studies and position statements to determine the current issues related to improving medication adherence in adolescent transplant recipients. Recent findingsTo date, there are no empirically validated treatments to promote adherence in pediatric transplant recipients. Yet, interventions in other chronic illness populations suggest that combined education and behavioral strategies are the most effective in improving medication adherence. The use of technology, such as the Internet and cellphones, provides a promising mechanism for delivering adherence-promoting interventions to adolescents. Preliminary studies in pediatric solid organ transplant suggest that interventions focused on targeted education and behavioral cues using cellphone text messages are promising strategies for promoting medication adherence. SummaryStrategies for promoting adherence in adolescent transplant recipients should include developmentally appropriate models and should incorporate health-related education, motivational strategies, and behavioral skills. Interventions should be tailored to meet individual needs, and should be a collaborative effort between the adolescent, family and healthcare providers.

Relationship Between Sleep Problems and Health-Related Quality of Life Among Pediatric Liver Transplant Recipients

Among adult liver transplant recipients (LTRs), sleep disturbances and fatigue are common. Sleep problems following pediatric liver transplantation may contribute to daytime fatigue and lower health‐related quality of life (HRQOL). The aim of this cross‐sectional study was to determine the impact of sleep problems on the HRQOL of pediatric LTRs using validated measures. Participants included 47 LTRs. Mean age of the LTRs was 10.9 ± 4.6 years, and mean time since transplantation was 6.2 ± 3.9 years. The primary indication for transplantation was biliary atresia (51%). According to parent reports, pediatric transplant recipients had symptoms of sleep‐disordered breathing, excessive daytime sleepiness, daytime behavior problems, and restless legs; 40.4% of parents and 43.8% of children reported significantly lower total HRQOL for the recipients. Age, time since transplantation, and health status were not significantly related to the quality of life. Hierarchical regression analyses revealed that the sleep‐disordered breathing subscale of the Pediatric Sleep Questionnaire accounted for significant variance in parent‐proxy reports on the Pediatric Quality of Life (PedsQL) summary scales measuring childrens psychosocial health (R2 = 0.36, P < 0.001), physical health (R2 = 0.19, P = 0.004), and total HRQOL (R2 = 0.35, P < 0.001). Also, the sleep‐disordered breathing subscale accounted for significant variance in the child self‐reported school functioning scale (R2 = 0.18, P = 0.03). Clinically significant sleep problems were more common among children with low total HRQOL. In conclusion, sleep problems were common in this cohort of pediatric LTRs and predicted significant variance in HRQOL. Prospective larger scale studies are needed to assess factors that contribute to sleep difficulties and low HRQOL in this population. The detection and treatment of significant sleep problems may benefit the HRQOL of pediatric LTRs. Liver Transpl 18:707–715, 2012.

A Pilot Study on Adolescents With Depression and Insomnia: Qualitative Findings From Focus Groups.

Nonpharmacological treatments for insomnia in adolescents with depression are lacking. This qualitative study was a thematic analysis of the unique characteristics of and preferences for an insomnia treatment in a group of depressed adolescents. Fourteen adolescents with insomnia (age range = 14–19, mean = 17, SD ± 1.7; 71% female) and depression completed a 90-min focus group. Information was elicited about sleep disruptions, insomnia’s impact on mood, and preferences for insomnia treatments. Themes included poor daytime functioning affecting sleep, lack of benefit from sleep medication, and bedtime rumination. Most identified sleep diaries as a barrier to treatment regardless of mode of delivery. Participants also preferred an in-person therapy. Insomnia therapy in adolescents should consider the unique characteristics of depression. Larger studies are warranted.

A Pilot Study of the Association Between Sleep Disturbance in Children With Liver Transplants and Parent and Family Health-Related Quality of Life

OBJECTIVE To investigate the relationship between sleep disturbance in children with liver transplants and parent and family health-related quality of life (HRQOL). METHOD 47 parents of children with liver transplants completed measures of child sleep and family HRQOL. Relationships between sleep and HRQOL and differences in HRQOL between groups with scores above and below the cutoff on a pediatric sleep measure were examined. RESULTS Parents endorsed higher rates of sleep-related breathing disorder (SRBD) and restless legs syndrome and periodic limb movements during sleep (RLS/PLMS) and lower HRQOL compared with published data. Significant correlations were found between SRBD and RLS/PLMS and HRQOL, and significant group differences in HRQOL were found between groups above and below the cutoff for behavior problems and RLS/PLMS. CONCLUSION There are significant relationships between symptoms of SRBD and RLS/PLMS in children with liver transplants and family HRQOL. Behavior problems may account for these strong relationships.

Modified Cognitive Behavioral Therapy for Insomnia in Depressed Adolescents: A Pilot Study

ABSTRACT Objective/Background: The purpose of the study was to pilot a five-week insomnia treatment in adolescents with major depressive disorder (MDD) and insomnia. This was an open-label trial of a modified-group cognitive behavioral therapy for insomnia (CBTI). Participants: Adolescents with MDD (n = 16; mean age = 17.3 +/– 1.7), characterized by the Children’s Depression Rating Scale–Revised T-score ≥ 55 and insomnia, characterized by > 30 min to fall or return to sleep and an Insomnia Severity Index (ISI) score of ≥ 7 participated. Methods: Sleep diaries, actigraphy, weekly ISI, Quick Inventory of Depressive Symptomatology (QIDS), and Multidimensional Fatigue Inventory (MFI) were completed. Results: Paired t-tests comparing pre- and posttreatment revealed a decrease in sleep onset latency from 41 min +/– 14 min to 18 min +/– 8.9 min (t = 5.9, p = .004). Linear mixed modeling across sessions revealed that ISI (B = 11.0, SE = 0.94, p < .001), QIDS (B = 11.3, SE = 0.96, p < .001), and MFI (B = 30.0, SE = 4.4, p < .001) improved across treatment. Daily sleep diaries showed decreased wake during the night (B = 22.8, SE = 7.19, p = .008), increased sleep time (B = 382.4, SE = 71.89, p < .001), and increased quality of sleep (B = 3.7, SE = 0.37, p < .001). When asked whether group members would recommend this group, 27% responded “yes” and 73% responded “definitely yes.” Conclusions: Additional controlled studies utilizing sleep-focused therapy in depressed adolescents with insomnia are warranted.