A preliminary investigation of sleep quality and patient-reported outcomes in pediatric solid organ transplant candidates.

The current cross-sectional, single-center study aimed to examine sleep quality in a sample of adolescents awaiting solid organ transplantation and to explore associations between sleep quality and both health-related quality of life and barriers to adherence. Thirty adolescents between the ages of 12 and 18 years (M age = 15.26, SD = 1.89) who were awaiting transplantation participated in this study. Participants completed measures of sleep quality, health-related quality of life, and barriers to adherence. T test and correlational analyses were performed to examine study aims. Adolescents awaiting transplantation had significantly lower levels of overall sleep quality compared to published norms of healthy peers. Domains of sleep quality were positively related to emotional and psychosocial health-related quality of life. Sleep quality domains were also negatively related to adherence barriers. This study provides preliminary evidence demonstrating that sleep quality among transplant candidates is compromised, and that poor sleep quality is related to adolescents' functioning across a number of domains during the pretransplant period. Results highlight the clinical importance of assessing and targeting sleep functioning in adolescents awaiting transplantation in order to reduce the negative influence of suboptimal sleep on functioning during this vulnerable period.

Burnout in Nurses Working With Youth With Chronic Pain: A Pilot Intervention.

Objective: Nurse burnout is a significant issue, with repercussions for the nurse, patients, and health-care system. Our prior mixed-methods analyses helped inform a model of burnout in nurses working with youth with chronic pain. Our aims were to (a) detail the development of an intervention to decrease burnout; (b) evaluate the intervention's feasibility and acceptability; and (c) provide preliminary outcomes on the intervention. Method: In total, 33 nurses working on a pediatric inpatient care unit that admits patients with chronic pain conditions participated in the single-session 90-min groups (eight to nine nurses per group). The intervention consisted of four modules including (1) helping patients view pain as multifaceted and shift attention to functioning; (2) teaching problem-solving and reflective listening skills; (3) highlighting positives about patients when venting with coworkers; and (4) improving nurses own self-care practices. Measures provided assessment of feasibility, acceptability, and effectiveness at baseline and 3 months postintervention in a single group, repeated measures design. Results: Data support the feasibility and acceptability of the intervention. Pilot outcome results demonstrated improvements in the target behaviors of education on psychosocial influences, self-care, and venting to coworkers as well as self-compassion, general health, and burnout. There were no changes in pain beliefs or the target behaviors of focus on functioning, empathizing with patient, or highlighting positives. Conclusions: Our single-session tailored group treatment was feasible and acceptable, and pilot data suggest that it is beneficial, but a more comprehensive approach is encouraged to reduce burnout that might be related to multiple individual, unit, and system factors.

Maladaptive Coping and Depressive Symptoms Partially Explain the Association Between Family Stress and Pain-Related Distress in Youth With IBD.

Objective: To extend existing research on the pain burden experienced by youth with inflammatory bowel disease (IBD) by examining the complexity of psychosocial factors involved in pain-related distress. Methods: Parents completed measures of family stress and their child's pain-related expressions of distress and coping. Youth with IBD rated their depressive symptoms (n = 183 dyads). Mediation analyses were performed using regression-based techniques and bootstrapping. Results: Greater family stress was positively related to children's pain-related expressions of distress and passive coping. Significant indirect effects were found in the relationship between family stress and expressed pain-related distress through parent-reported passive coping, depressive symptoms, and both passive coping and depressive symptoms sequentially. Conclusions: Results suggest that family stress can place children at risk for greater expressed pain-related distress through effects on coping and depressive symptoms. Addressing psychosocial difficulties is important for closing the gap between disability and health in youth with IBD.

Multimethod Assessment of Medication Nonadherence and Barriers in Adolescents and Young Adults With Solid Organ Transplants.

Objective: To (a) examine levels of medication nonadherence in adolescent and young adult (AYA) solid organ transplant recipients based on AYA- and caregiver proxy-reported nonadherence to different medication types and the medication-level variability index (MLVI) for tacrolimus, and (b) examine associations of adherence barriers and AYA and caregiver emotional distress symptoms with reported nonadherence and the MLVI. Method: The sample included 47 AYAs (M age = 16.67 years, SD = 1.74; transplant types: 25% kidney, 47% liver, 28% heart) and their caregivers (94 total participants). AYAs and caregivers reported on AYAs' adherence barriers and their own emotional functioning. Nonadherence was measured with AYA self- and caregiver proxy-report and the MLVI for tacrolimus. Results: The majority of AYAs and caregivers denied nonadherence, with lower rates of nonadherence reported for antirejection medications. In contrast, 40% of AYAs' MLVI values indicated nonadherence to tacrolimus. AYAs and caregivers who verbally acknowledged nonadherence had more AYA barriers and greater caregiver emotional distress symptoms compared with those who denied nonadherence. AYAs with MLVIs indicating nonadherence had more barriers than AYAs with MLVIs indicating adherence. Conclusions: Multimethod nonadherence evaluations for AYA transplant recipients should assess objective nonadherence using the MLVI, particularly in light of low reported nonadherence rates for antirejection medications. Assessments should include adherence barriers measures, given associations with the MLVI, and potentially prioritize assessing barriers over gauging nonadherence via self- or proxy-reports. Caregiver emotional distress symptoms may also be considered to provide insight into family or environmental barriers to adherence.

Multi-Site Comparison of Patient, Parent, and Pediatric Provider Perspectives on Transition to Adult Care in IBD.

PURPOSE: This multi-site study examines patient, parent, and pediatric provider perspectives on what is most important for successful transition. DESIGN AND METHODS: Using the Transition Readiness Assessment Questionnaire, 190 participants recruited from two pediatric IBD centers selected the top five skills they considered "most important for successful transition." Rankings were summarized and compared by group. RESULTS: While patients, parents, and clinicians all identified "calling the doctor about unusual changes in health" and "taking medications correctly and independently" as being important, each stakeholder group qualitatively and statistically differed in terms of transition readiness skills emphasized. Patients endorsed "calling the doctor about unusual changes in health" and "being knowledgeable about insurance coverage," as being most important to successful transition while parents emphasized health monitoring and problem solving. Pediatric providers emphasized adherence to treatment and reporting unusual changes in health. There were statistically significant differences in endorsement rates across participants for seven transition readiness skills. Patients agreed with providers 80% of the time and with their parents 40% of the time. Parent-provider agreement was 60%. CONCLUSIONS: Although there was some overlap across groups, areas of emphasis differed by informant. Patients emphasized skills they need to learn, parents emphasized skills they most likely manage for their children, and providers emphasized skills that directly impact their provision of care. PRACTICE IMPLICATIONS: Patient, parent, and provider beliefs all need to be considered when developing a comprehensive transition program. Failure to do so may result in programs that do not meet the needs of youth with IBD.

Transition readiness, adolescent responsibility, and executive functioning among pediatric transplant recipients: Caregivers' perspectives.

This study aimed both to evaluate caregivers' perspectives of EF and transition readiness among adolescent transplant recipients and to examine the indirect effects of adolescent responsibility and parent involvement across domains of EF. Fifty-seven caregivers of adolescent solid organ transplant recipients participated in this study and completed measures of adolescent EF, transition readiness, responsibility in healthcare behavior, and parent involvement. Bootstrapping procedures were used to test indirect effects. Caregiver report of adolescent EF was significantly related to transition readiness among transplant recipients. Significant indirect effects were found for adolescent responsibility but not parent involvement. No significant differences were found between metacognitive and behavioral regulation domains of EF in the association with transition readiness. Assessment of adolescent EF skills may help guide the development of individualized transition readiness guidelines to promote successful gains in self-management abilities as well as eventual transfer to adult medical services.

Pretransplant patient, parent, and family psychosocial functioning varies by organ type and patient age.

The goal of this study was to compare pretransplant patient HRQOL, parent psychological functioning, and the impact of the patient's ongoing illness on the family between organ types (ie, kidney, liver, heart) and age-groups (ie, children, AYAs). The sample included 80 pediatric patients with end-stage organ disease who were evaluated for transplantation and their parents. Parents completed self- and proxy reports at patients' pretransplant evaluations. Results indicated that patients evaluated for heart transplants consistently had lower HRQOL and their parents had greater psychological distress compared to the kidney and liver groups. Within the heart group, parents and families of children (<12 years old) experienced significantly more distress and impact of the patient's illness on the family compared to those of AYAs (≥12 years old). Pediatric patients awaiting heart transplants, particularly younger children, and their parents and families may have greater psychosocial needs compared to patients awaiting kidney or liver transplants.

Executive Functioning, Barriers to Adherence, and Nonadherence in Adolescent and Young Adult Transplant Recipients.

OBJECTIVE : To evaluate levels of executive functioning in a sample of adolescent and young adult (AYA) transplant recipients, and to examine executive functioning in association with barriers to adherence and medication nonadherence. METHOD : In all, 41 caregivers and 39 AYAs were administered self- and proxy-report measures. RESULTS : AYA transplant recipients have significant impairments in executive functioning abilities. Greater dysfunction in specific domains of executive functioning was significantly associated with more barriers to adherence and greater medication nonadherence. CONCLUSION : AYA transplant recipients are at increased risk for executive dysfunction. The assessment of executive functioning abilities may guide intervention efforts designed to decrease barriers to adherence and promote developmentally appropriate levels of treatment responsibility.

Providers' assessment of transition readiness among adolescent and young adult kidney transplant recipients.

The Readiness for Transition Questionnaire- provider version (RTQ-Provider) was developed to evaluate adolescent patients' transition readiness and healthcare behaviors from the perspective of the healthcare provider. The RTQ-Provider is a parallel version of the RTQ-Teen and RTQ-Parent completed by patients and parents. This study seeks to evaluate the psychometric properties of the RTQ-Provider and its utility as a clinical transition planning tool. Participants consisted of 49 kidney transplant recipients between the ages of 15 and 21. The RTQ-Provider was completed by the pediatric nephrologist and psychologist from the multidisciplinary healthcare team and compared to RTQ data from teens and parents. The RTQ-Provider demonstrated good-to-excellent internal consistency and interrater reliability. Construct validity was supported through significant predictive relationships between providers' perceptions of transition readiness and older patient age, increased patient healthcare responsibility, and decreased parent involvement in health care. By providing parallel teen, parent, and provider forms, the RTQ has the potential to foster open communication between patients, families, and healthcare team members regarding transition readiness. The study provides initial support for the RTQ-Provider as a clinical tool to assess providers' perceptions of transition readiness; however, future longitudinal research is needed to evaluate predictive validity following patients' transfer to adult care.

Intellectual and academic performance in children undergoing solid organ pretransplant evaluation.

Although prior research has shown lower intellectual functioning across pediatric solid organ transplant recipients relative to matched siblings or norm comparisons, few studies have assessed intellectual and academic performance prior to transplant across organ groups. The current data examine intellectual and academic functioning in children being evaluated for kidney, liver, or heart transplant. This investigation included intellectual and academic testing data from 195 children and adolescents between the ages of six and 19 yr evaluated for solid organ transplantation. Across organ groups, patients' intellectual functioning as estimated by the WASI/WASI-II at the time of pretransplant evaluation was within the average range, but lower compared to test norms. Patients demonstrated lower estimates of word reading, math computation, and spelling skills compared to the normal population, with the exception of heart patients' word reading and spelling skills and liver patients' spelling scores. Cognitive and academic impairments exist in children prior to transplantation. Findings emphasize the support that patients may require to manage the complicated medical regimen and succeed academically. Routine cognitive and academic assessment can inform healthcare providers regarding transplant patients' capacity to take on increasing medical responsibility and successfully reintegrate into the school environment.

Assessment of family psychosocial functioning in survivors of pediatric cancer using the PAT2.0.

BACKGROUND: This study aimed to examine clinical validity and utility of a screening measure for familial psychosocial risk, the Psychosocial Assessment Tool 2.0 (PAT2.0), among pediatric cancer survivors participating in long-term survivorship care. METHODS: Caregivers (N=79) completed the PAT2.0 during their child's survivorship appointment. Caregivers also reported on family engagement in outpatient mental health treatment. Medical records were reviewed for treatment history and oncology provider initiated psychology consults. RESULTS: The internal consistency of the PAT2.0 total score in this survivorship sample was strong. Psychology was consulted by the oncology provider to see 53% of participant families, and families seen by psychology had significantly higher PAT2.0 total scores than families without psychology consults. PAT2.0 total scores and corresponding subscales were higher for patients, parents, and siblings enrolled in outpatient mental health services since treatment completion. Results were consistent with psychosocial risk categories presented within the Pediatric Psychosocial Preventative Health Model. Fifty-one percent of families presenting for survivorship care scored in the "universal" category, 34% scored in the "targeted" category, and 15% scored in the "clinical" category. CONCLUSIONS: Data indicate that the overall proportions of families experiencing "universal", "targeted", and "clinical" levels of familial distress may be constant from the time of diagnosis into survivorship care. Overall, the PAT2.0 demonstrated strong psychometric properties among survivors of pediatric cancer and shows promise as a psychosocial screening measure to facilitate more effective family support in survivorship care.

Behavioral functioning in youth with inflammatory bowel disease: perceived barriers as mediator of medication adherence.

OBJECTIVES: To examine the relationship between behavioral functioning specific to levels of attention and conduct problems and prescription medication adherence in youth with inflammatory bowel disease (IBD), and examine the mediational role of perceived barriers to adherence. Identifying potentially malleable factors associated with poor adherence such as behavioral functioning and barriers may guide treatment. METHODS: 85 adolescents with IBD and their parents completed measures of adherence, attention and conduct problems, and barriers. To examine mediation models, indirect effects were tested using bootstrapping procedures outlined by Preacher & Hayes (2004, 2008). RESULTS: The majority of participants reported normative levels of attention and conduct problems. Higher levels of attention problems, conduct problems, and barriers were negatively associated with adherence. Bootstrapping procedures indicated that barriers mediated the effects of behavioral functioning on adherence. CONCLUSIONS: Barriers may be a proximal factor contributing to the relationship between everyday behavioral functioning and adherence in youth with IBD.

Dyadic confirmatory factor analysis of the inflammatory bowel disease family responsibility questionnaire.

OBJECTIVES: Evaluate the factor structure of youth and maternal involvement ratings on the Inflammatory Bowel Disease Family Responsibility Questionnaire, a measure of family allocation of condition management responsibilities in pediatric inflammatory bowel disease. METHODS: Participants included 251 youth aged 11-18 years with inflammatory bowel disease and their mothers. Item-level descriptive analyses, subscale internal consistency estimates, and confirmatory factor analyses of youth and maternal involvement were conducted using a dyadic data-analytic approach. RESULTS: Results supported the validity of 4 conceptually derived subscales including general health maintenance, social aspects, condition management tasks, and nutrition domains. Additionally, results indicated adequate support for the factor structure of a 21-item youth involvement measure and strong support for a 16-item maternal involvement measure. CONCLUSIONS: Additional empirical support for the validity of the Inflammatory Bowel Disease Family Responsibility Questionnaire was provided. Future research to replicate current findings and to examine the measure's clinical utility is warranted.

Health-related quality of life and perceived need for mental health services in adolescent solid organ transplant recipients.

The purpose of the current investigation was to assess interest in mental health services among parents of adolescent solid organ transplant recipients and the relationship between parent perceived need for mental health services and patient health-related quality of life (HRQOL). Sixty-three parents rated interest in receiving 10 mental health services, and patient HRQOL ratings were gathered from adolescent transplant recipients and their parents. Ninety-four percent of parents expressed some level of interest in at least one of the proposed services, with over 40 % indicating maximum interest. Parents' perceived need for mental health services was inversely related to adolescent and parent reports of HRQOL on the behavior, mental health, family cohesion, and parental impact-emotional domains. Results suggest that parents of adolescent solid organ transplant recipients are interested in receiving mental health services for their families. Assessment of need for mental health services and HRQOL may inform the medical team of families requiring intervention.

Pediatric capsule endoscopy: review of the small bowel and patency capsules.

BACKGROUND AND OBJECTIVE: Because capsule endoscopy (CE) avoids ionizing radiation, deep sedation, and general anesthesia, CE may be valuable in pediatrics. We report a single pediatric center's experience with the use and safety of CE. METHODS: In a retrospective review of consecutive CE studies, 284 CE studies were performed in 277 patients with a mean age of 15 (±3.7) years during a 5-year period. The youngest to swallow the capsule was 4.6 years old. Twenty capsules were placed. Overall, 245 (86%) patients underwent CE for suspected (184, 65%) or confirmed (61, 21%) Crohn disease (CD); 27 (9.5%) anemia or gastrointestinal bleeding; 6 (2%) polyposis; and 4 (1.4%) celiac disease. RESULTS: Positive findings were observed in 205 (72%) of the studies, with 152 (54%) having small bowel findings. Of these, 72 (47%) were diagnostic. Gastric (95, 33%) and colonic (31, 11%) abnormalities were also identified. Five CE studies (1.8%) resulted in retention of the capsule in nonsurgical patients. A patency capsule before CE in 23 patients allowed 19 CE to proceed with only 1 retained capsule. In 65 (21%) patients, the video capsule did not enter the colon before the video's end. Of these, 36 (65%) had significant findings, including 27 (49%) documenting small bowel (SB) CD. CONCLUSIONS: CE is useful to diagnose SB disease in children. Even in a study population with a high prevalence of confirmed and suspected CD, the risk of retention remains small. The patency capsule may lessen that risk. CE may identify gastric or colonic disease even when SB lesions are not present.

Participation and attrition in a coping skills intervention for adolescent girls with inflammatory bowel disease.

The current study examined factors associated with adolescent and parent participation in a coping skills intervention for adolescent girls with inflammatory bowel disease (IBD) and examined factors associated with attrition related to intermittent missing data. Thirty-one adolescent girls with IBD and their parents enrolled in the intervention. Psychosocial and disease factors related to participation in the 6-week web component of the coping skills intervention were examined as were baseline group differences between those who provided post-treatment data and those who did not. Adolescents experiencing more difficulties related to their disease and psychosocial functioning participated less in the web component of the treatment intervention. Families who attrited had higher baseline levels of parental catastrophic thoughts, parenting stress, and adolescent depression. Families experiencing greater levels of psychological and disease-related difficulties may be at risk for low participation and eventual dropout from pediatric IBD psychological treatment interventions.

Association of disease, adolescent, and family factors with medication adherence in pediatric inflammatory bowel disease.

OBJECTIVE: To examine factors associated with adolescent and parent-reported adherence to prescription and over-the-counter (OTC) medications in a cross-sectional sample of youth with inflammatory bowel disease (IBD). METHOD: Ninety adolescents and their parents completed measures of medication adherence and disease, individual, and family factors while attending an outpatient gastroenterology appointment. RESULTS: Longer time since diagnosis, greater perceived disease severity, and a lack of autonomous motivation to adhere predicted adolescent report of lower adherence to prescription medications. Similarly, longer time since diagnosis predicted adolescent report of lower adherence to OTC medications. Less time since diagnosis, greater maternal involvement in the medical regimen, higher perceived disease severity, and less perceived conflict predicted better parent-reported adherence to OTC medications. CONCLUSIONS: Interventions for improving adherence in adolescents with IBD should address disease, individual, and family factors with special attention given to adolescents who have been diagnosed longer.

Predictors of long-term health-related quality of life in adolescent solid organ transplant recipients.

OBJECTIVES: This study aimed to identify prospective predictors of health-related quality of life (HRQOL) for adolescent solid organ (kidney, liver, heart, lung) transplant recipients. METHODS: Data regarding demographics, individual/transplant characteristics, and environmental characteristics were gathered from 66 adolescent transplant recipients and their families at baseline and used to predict the physical functioning, mental health, and general health perceptions domains of HRQOL 18 months later. RESULTS: Baseline levels of HRQOL explained the greatest amount of variance in levels of HRQOL at follow-up; however, specific demographic (i.e., income), individual/transplant (i.e., adherence, frequency of rescheduled clinic appointments, and presence of a rejection episode), and environmental factors (i.e., family conflict) contributed to the variance in HRQOL domains beyond baseline levels. CONCLUSIONS: This study identified certain modifiable individual and environmental factors and non-modifiable risk factors associated with lower future HRQOL. Transplant centers should begin screening and addressing these factors to potentially improve HRQOL.

A pilot study evaluating an abbreviated version of the cognitive remediation programme for youth with neurocognitive deficits.

PRIMARY OBJECTIVE: To determine the effectiveness of an abbreviated version of an established cognitive remediation programme for children with neurological disorders and attention problems in an outpatient setting. METHODS AND PROCEDURES: Eighteen 6-15-year-old children diagnosed with neurological and attention difficulties completed a six-module training programme aimed at improving attention. This programme was a shorter version of the Cognitive Remediation Programme (CRP), which has been successfully implemented with children with neurocognitive deficits. Parents completed measures of their children's attention and children completed neuropsychological measures of attention. MAIN OUTCOMES AND RESULTS: The programme was associated with improvement in several aspects of parent-reported attention and children's performance on tasks measuring attention. CONCLUSIONS: The shortened version of the CRP shows promise as a brief treatment for attention problems in outpatient neurological populations. Future research should assess programme effectiveness using a control group, longer-term follow-up and teacher reports.

Factor structure of the pediatric symptom checklist with a pediatric gastroenterology sample.

Pediatric gastrointestinal disorders are commonly experienced by youth and have been shown to be associated with increased rates of psychosocial difficulties. Aim of the current study was to extend development of the Pediatric Symptom Checklist (PSC), a brief parent-completed measure designed to assess children's behavioral and emotional functioning, by examining its factor structure in a pediatric gastroenterology sample. Parents of 176 children ages 4-16 years visiting a pediatric gastroenterologist completed the PSC. The factor structure of the PSC was examined using principal component analysis. Parallel analysis was utilized to determine the number of factors to retain and indicated that three factors existed within the data. A principal component analysis with varimax rotation identified factors measuring internalizing, externalizing, and attention difficulties. The three factors that emerged on the PSC provide initial support for the utility of the PSC in pediatric gastroenterology clinics.