Health literacy and its association with adherence in pediatric liver transplant recipients and their parents.

OBJECTIVE: Non-adherence to pediatric regimens is a common concern. Low health literacy is correlated with poor outcomes in adults but is understudied in pediatrics. The current project aimed to determine the relationship between health literacy, adherence, and outcomes in pediatric liver transplant recipients. Hypotheses included a) parent and patient health literacy would be positively correlated; and b) low patient and/or parent health literacy would be negatively correlated with adherence and health outcomes. PATIENTS AND METHODS: Eligible participants were recruited during routine follow-up visits in a pediatric liver transplant clinic. Parents and patients (>13 years old) completed 2 measures of health literacy. Patients ≥18 years completed health literacy measures without corresponding parent surveys. Adherence variables and health outcomes were obtained from medical records. RESULTS: Seventy-nine patients across two sites completed the study. Variance in classification of health literacy between measures was observed; however, most parents (82%-100%) scored within an "adequate literacy" range. More adolescents scored in lower health literacy ranges relative to the parents. Markers of SES were positively correlated with health literacy. Parent health literacy was negatively associated with biopsy-proven rejection episodes and the number of hospitalizations; however, it was not associated with measures of tacrolimus adherence. There were no relationships observed between parent and adolescent health literacy. CONCLUSIONS: Health literacy is an important consideration in managing patient care; however, available measures demonstrate variability in capturing the skills of patients. Effective communication strategies may ameliorate admittedly small, but negative, impacts of limited health literacy on outcomes.

Longitudinal Relationship Between Time-Out and Child Emotional and Behavioral Functioning.

OBJECTIVE: Time-out is a widely used child discipline strategy and one of the only strategies currently recommended by the American Academy of Pediatrics. Despite its widespread use and significant evidence to support its effectiveness in decreasing problem behavior, time-out is often suggested to be harmful or ineffective by the popular media and select professional organizations. Empirical evidence regarding possible side effects of time-out is limited. The present study examined the relationship between reported use of time-out and child emotional and behavioral functioning and parent-child relationships using longitudinal, archival data. METHODS: The study used archival, longitudinal data from the Early Head Start Research and Evaluation study. This study tracked families with children in Early Head Start at 3 different time points as follows: baseline (aged 0-3 years), pre-kindergarten, and fifth grade. Parent interviews, including questions on the use of time-out, were conducted when the children were 36 months old. Indicators of child emotional and behavioral health were measured at 36 months, pre-K, and fifth grade. Statistical analyses were completed to assess for potential side effects of time-out on child behavioral and emotional functioning and parent-child relationships. RESULTS: Analyses for all outcome variables suggest no significant difference for children whose parents reported using time-out versus those who did not. CONCLUSION: Parental reported use of time-out was not associated with long-term negative outcomes. Further research in this area is necessary to continue to address the multitude of concerns related to time-out that are presented by the media.

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

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.

Effect of Adenotonsillectomy on Parent-Reported Sleepiness in Children with Obstructive Sleep Apnea.

STUDY OBJECTIVES: To describe parental reports of sleepiness and sleep duration in children with polysomnography (PSG)-confirmed obstructive sleep apnea (OSA) randomized to early adenotonsillectomy (eAT) or watchful waiting with supportive care (WWSC) in the ChildHood Adenotonsillectomy Trial (CHAT). We hypothesized children with OSA would have a larger improvement in sleepiness 6 mo following eAT compared to WWSC. METHODS: Parents of children aged 5.0-9.9 y completed the Epworth Sleepiness Scale modified for children (mESS) and the Pediatric Sleep Questionnaire-Sleepiness Subscale (PSQ-SS). PSG was performed at baseline and at 7-mo endpoint. Children underwent early adenotonsillectomy or WWSC. RESULTS: The mESS and PSQ-SS classified 24% and 53% of the sample as excessively sleepy, respectively. At baseline, mean mESS score was 7.4 ± 5.0 (SD) and mean PSQ-SS score was 0.44 ± 0.30. Sleepiness scores were higher in African American children; children with shorter sleep duration; older children; and overweight children. At endpoint, mean mESS score decreased by 2.0 ± 4.2 in the eAT group versus 0.3 ± 4.0 in the WWSC group (P < 0.0001); mean PSQ-SS score decreased 0.29 ± 0.40 in eAT versus 0.08 ± 0.40 in the WWSC group (P < 0.0001). Despite higher baseline sleepiness, African American children experienced similar improvement with adenotonsillectomy than other children. Improvement in sleepiness was weakly associated with improved apnea-hypopnea index or oxygen desaturation indices, but not with change in other polysomnographic measures. CONCLUSIONS: Sleepiness assessed by parent report was prevalent; improved more after eAT than after WWSC; and was not strongly predicted by sleep disturbances identified by PSG. CLINICAL TRIAL REGISTRATION: Childhood Adenotonsillectomy Study for Children with OSA (CHAT). ClinicalTrials.gov Identifier #NCT00560859.

Quality Improvement Targeting Adherence During the Transition from a Pediatric to Adult Liver Transplant Clinic.

The transition from pediatric to adult transplant care is a high risk period for non-adherence and poor health outcomes. This article describes a quality improvement initiative integrated into a pediatric liver transplant program that focused on improving outcomes following the transfer from pediatric to adult liver transplant care. Using improvement science methodology, we evaluated the impact of our center's transition readiness skills (TRS) program by conducting a chart review of 45 pediatric liver transplant recipients who transferred to adult transplant care. Medication adherence, clinic attendance, and health status variables were examined for the year pre-transfer and first year post-transfer. 19 recipients transferred without participating in the TRS program (control group) and 26 recipients participated in the program prior to transferring to the adult clinic (TRS group). The TRS group was significantly older at the time of transfer, more adherent with medications, and more likely to attend their first adult clinic visit compared to the control group. Among the TRS group, better adolescent and parent regimen knowledge were associated with greater adherence to post-transfer clinic appointments. Transition planning should focus on the gradual shift in responsibility for health management tasks, including clinic attendance, from parent to adolescent. There may be support for extending transition support for at least 1 year post-transfer to promote adherence.

Rectal prolapse in older children associated with behavioral and psychiatric disorders.

PURPOSE: Rectal prolapse (RP) beyond infancy is challenging, and despite surgical correction, recurrences are not uncommon, suggesting that underlying contributing processes may have a role. This study highlights a previously poorly recognized relationship between RP in older children and behavioral/psychiatric disorders (BPD). We describe the incidence of recurrence and use of behavioral, psychological and physical therapeutic tactics in a multidisciplinary approach to pediatric RP. METHODS: A retrospective 20-year review of RP in children >3 years of age was adopted. Charts were reviewed for gastrointestinal, connective tissue, and BPD conditions, incidence of recurrence, and therapies employed including surgery, behavioral, and physical therapy. RESULTS: 45 patients were included, ranging from 3 to 18 years of age; 29 males. Thirty-seven underwent surgery. Six of the 45 were excluded as they had gastrointestinal or connective tissue conditions placing them at risk for prolapse. Over half (21/39, 53%) had BPD. Slightly more than half of patients had a recurrence, but there was no increased risk in those with associated BPD. While all 21 underwent some therapy for their BPD, over the past 5 years we have enrolled eight of these patients into a program of behavioral and/or physical therapy with all reporting reductions in frequency and severity of prolapse after initiating pelvic floor strengthening, behavior modification, and biofeedback, and avoidance of surgery in three. CONCLUSIONS: This study highlights an important group of pediatric patients with RP that may well benefit from a combination of behavioral therapy, physical therapy as well as surgical intervention to obtain the most optimal outcome.

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.

Internet guidance on time out: inaccuracies, omissions, and what to tell parents instead.

OBJECTIVE: Pediatricians are frequently asked to address parents' behavioral concerns. Time out (TO) is one of the few discipline strategies with empirical support and is recommended by the American Academy of Pediatrics. However, correctly performed, TO can be a complex procedure requiring training difficult to provide in clinic due to time and cost constraints. The Internet may be a resource for parents to supplement information provided by pediatricians. The present study included evaluation of information on TO contained in websites frequently accessed by parents. It was hypothesized that significant differences exist between the empirically supported parameters of TO and website-based information. METHODS: Predefined search terms were entered into commonly used search engines. The information contained in each webpage (n = 102) was evaluated for completeness and accuracy based on research on TO. Data were also collected on the consistency of information about TO on the Internet. RESULTS: None of the pages reviewed included accurate information about all empirically supported TO parameters. Only 1 parameter was accurately recommended by a majority of webpages. Inconsistent information was found within 29% of the pages. The use of TO to decrease problem behavior was inaccurately portrayed as possibly or wholly ineffective on 30% of webpages. CONCLUSIONS: A parent searching for information about TO on the Internet will find largely incomplete, inaccurate, and inconsistent information. Since nonadherence to any 1 parameter will decrease the efficacy of TO, it is not recommended that pediatricians suggest the Internet as a resource for supplemental information on TO. Alternative recommendations for pediatricians are provided.

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 children's psychosocial health (R(2) = 0.36, P < 0.001), physical health (R(2) = 0.19, P = 0.004), and total HRQOL (R(2) = 0.35, P < 0.001). Also, the sleep-disordered breathing subscale accounted for significant variance in the child self-reported school functioning scale (R(2) = 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.

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

The need to prepare pediatric transplant recipients for the transfer to adult-centered transplant care has received increased attention. This study aimed to determine adolescent and young adult LTR and parent perceptions and attitudes about the transition process. LTR and their parents completed a survey assessing level of prior thought and interest in learning about transferring care, knowledge of the transition process, perceived importance of self-management skills, concerns about moving to the adult clinic, and responsibility for health management tasks. Responses were analyzed by age, gender, and time since transplantation. Participants included 46 LTR (mean age = 16.6 yr; range 12-21), and 31 parents. Recipients and parents reported moderate concern about transition, with leaving pediatric providers being a primary worry. LTR ≥16 yr reported greater health care responsibility and increased thought, interest, and knowledge about transition. There were significant differences between parent and LTR perceptions of health care responsibility, indicating that LTR perceive having more independence than what their parents report. Overall, results suggest that adolescent and young adult LTR and their parents perceive the importance of transitional care, but demonstrate poor knowledge of the process. There remains a need for improved transition planning for both adolescents and parents.

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

PURPOSE OF REVIEW: Nonadherence 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 FINDINGS: To 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. SUMMARY: Strategies 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.

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

To examine transition readiness, adherence, and health outcomes in pediatric liver transplant recipients using a clinically administered screening measure. Seventy-one pediatric liver transplant recipients (11-20 yr) and 58 parents completed a clinic-based TRS measuring perceived and demonstrated self-management skills, AoR for health-related tasks, regimen knowledge, and psychosocial adjustment. Adherence was measured using s.d. of immunosuppressants, proportion of immunosuppressant blood levels out of target range, and clinic attendance. Health outcomes included liver test panels, biopsies, rejection episodes, and hospitalizations. Results indicate that all domains of transition readiness, with the exception of demonstrated skills, and non-adherence were positively correlated with age. Proportion of immunosuppressant blood levels below target range was positively correlated with self-management skills and increased responsibility for medication tasks. Parent regimen knowledge was associated with clinic attendance. Health outcomes were significantly related to medication non-adherence, but not to transition readiness domains. Medication adherence is considered to be a key factor in the transition from pediatric to adult-centered transplant care. Non-adherence is associated with an increased risk for medical complications and is potentially modifiable. Interventions to promote self-management skills and adherence should be an essential component of transition planning.