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Background: Adolescent and young adult (AYA) solid organ transplant recipients experience worsening medical outcomes during transition to adult healthcare. Current understanding and definitions of transition success emphasize first initiation of appointment attendance in adult healthcare; however, declines in attendance over time after transfer remain possible, particularly as AYAs are further removed from their pediatric provider and assume greater independence in their care., Methods: The current study assessed health-care utilization, medical outcomes, and transition success among 49 AYA heart, kidney, or liver recipients recently transferred to adult healthcare. Differences in outcomes were examined along two transition success criteria: (1) initial engagement in adult healthcare within 6 or 12 months of last pediatric appointment and (2) retention in adult healthcare over 3 years following last pediatric appointment. Growth curve modeling examined change in attendance over time., Results: Successful retention in adult healthcare was significantly related to more improved clinical outcomes, including decreased number and duration of hospitalizations and greater medication adherence, as compared to initial engagement. Significant declines in appointment attendance over 3 years were noted, and individual differences in declines were not accounted for by age at transfer or time since transplant., Conclusions: Findings underscore support for AYAs after transfer, as significant declines in attendance were noted after initiating adult care. Clinical care teams should examine transition success longitudinally to address changes in health-care utilization and medical outcomes. Attention to interventions and administrative support aimed at maintaining or increasing attendance and identifying risk factors and intervention for unsuccessful transition is warranted., (© 2022 Wiley Periodicals LLC.)

Background: Pediatric solid organ transplant recipients are susceptible to posttraumatic stress symptoms (PTSS), given the presence of a life-threatening chronic medical condition and potential for complications. However, little is known about what individual characteristics are associated with an increased risk for PTSS among youth who received an organ transplant. The aim of the current study was to evaluate PTSS and its associations with executive functioning (EF) and personality (i.e., neuroticism and conscientiousness) among adolescents with solid organ transplants., Methods: Fifty-three adolescents (M age  = 16.40, SD = 1.60) with a kidney, heart, or liver transplant completed self-report measures of PTSS and personality, whereas caregivers completed a caregiver-proxy report of adolescent EF., Results: Twenty-two percent of adolescent transplant recipients reported clinically significant levels of PTSS. Higher EF difficulties and neuroticism levels, and lower conscientiousness levels were significantly associated with higher PTSS (rs -.34 to .64). Simple slope analyses revealed that adolescents with both high EF impairment and high levels of neuroticism demonstrated the highest PTSS (t = 3.47; p < .001)., Conclusions: Most adolescent transplant recipients in the present study did not report clinically significant levels of PTSS; however, those with high neuroticism and greater EF difficulties may be particularly vulnerable to PTSS following organ transplantation. Following transplantation, medical providers should assess for PTSS and risk factors for developing PTSS. Identification of those at risk for PTSS is critical, given the strong associations between PTSS and certain medical outcomes (e.g., medication nonadherence) among these youth., (© 2021 Wiley Periodicals LLC.)

Background: It is widely assumed that pediatric solid organ transplantation results in better caregiver-reported outcomes, including reduced caregiver psychological distress and increased child health-related quality of life (HRQOL), yet little empirical evidence of this expectation exists. The current investigation aims to fill this gap and identify key clinical course factors predictive of caregiver-reported outcomes., Methods: Forty-nine caregivers of children (M age  = 10.30 years, SD = 5.43) presenting for kidney, liver, or heart transplant evaluation reported on their psychological distress levels (anxiety, depression, somatization, and global psychological stress) and their children's HRQOL at children's pretransplant evaluations and 6 months post-transplant. Clinical course factors were abstracted via medical chart review., Results: Caregivers did not report significant changes in their psychological distress from pre- to post-transplant but reported significantly improved child HRQOL across most domains (ds = -.45 to -.54). Higher post-transplant caregiver global psychological distress was predicted by older child age, shorter time since diagnosis, and lower pretransplant caregiver-reported child HRQOL even after controlling for pretransplant caregiver psychological distress. Lower post-transplant child total HRQOL was predicted by more post-transplant hospitalizations even after controlling for pretransplant child total HRQOL., Conclusions: These preliminary results indicate pediatric solid organ transplantation was associated with some improved caregiver-reported outcomes, specifically children's HRQOL, but not caregivers' psychological distress. Linear regression models identify several clinical course and pretransplant factors associated with transplantation outcomes. Characterizing how caregivers view their psychological distress levels and children's HRQOL across the transplantation process could inform family-centered holistic care and support caregiver adaptation to transplantation., (© 2021 Wiley Periodicals LLC.)

This study examined patient-reported sleep quality in a single-center cross-sectional sample of adolescents with solid organ transplants and evaluated associations between sleep quality, psychosocial functioning (ie, depression/anxiety symptoms), and HRQOL. Health disparities associated with minority race/ethnicity and socioeconomic variables were also examined. Sixty-nine adolescents (M = 16.51 years; SD = 1.63) who received a solid organ transplant (kidney: n = 25; liver: n = 24; heart: n = 20) completed self-report measures of sleep quality, psychosocial functioning, and HRQOL. Adolescent transplant recipients endorsed significantly lower levels of sleep quality (ie, falling asleep) compared with previously published norms of healthy peers (t = -3.60; P ≤ .001). Higher sleep quality was significantly associated with fewer anxiety and depressive symptoms (r = -.31 to -.40), and higher physical and psychosocial HRQOL (r = .33-.43). Adolescents from minority backgrounds had significantly worse sleep quality compared with non-Hispanic Whites. Adolescent transplant recipients, particularly those from minority backgrounds, may be at increased risk for experiencing poor sleep quality. Suboptimal sleep is a risk factor for higher levels of anxiety and depressive symptoms, as well as lower levels of physical and psychosocial HRQOL. Sleep is an important modifiable factor that, if improved, may contribute to lower anxiety/depressive symptoms and better HRQOL in adolescent transplant recipients., (© 2019 Wiley Periodicals, Inc.)

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., (© 2019 Wiley Periodicals, Inc.)

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., (© 2017 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Poor adherence to self-care among youth with type-1 diabetes (YWD) can lead to significant long-term health problems. Negative diabetes-related emotions (NDRE) are common, and are significantly correlated with poor/deteriorating A1c. Resilient youth handle diabetes self-care challenges, such as adjusting for diabetes in public, better. Resiliency skills and perceptions include benefit finding (BF), fitting in with friends (FI), diabetes acceptance (DA), emotion processing (EP) and emotion expression (EE). First study goal: to verify structure of underlying measurement variables: NDRE, EP, EE, BF, DA, FI and comfort in adjusting for diabetes in public (CA) among youth 11-16 yr of age with diabetes. We also hypothesize: (i) YWD who engage in EP and EE will have higher levels of BF, FI, DA, (ii) EP and EE will moderate NDRE impact and (iii) higher levels of EP, EE, BF, FI and DA will be associated with higher CA., Subjects: 243 summer diabetes campers between 11-16 yr of age., Methods: Pre-camp survey., Results: Measurement variables were verified. EP and EE to friends were positively associated with BF, FI and DA for most YWD. NDRE was negatively associated with FI and DA, and for YWD aged 14-16 yr with CA. FI was positively associated with CA. EE moderated the impact of NDRE on CA among youth 11-13 yr. R 2 for CA in youth 14-16 yr was 48.2%, for 11-13 yr was 38.3%. DA was positively associated with CA for youth 14-16 yr., Conclusions: Resilience factors appear to influence CA either directly or indirectly., (© 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

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., (© 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

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., (© 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Solid organ transplantation requires ongoing adherence to immunosuppressants and other medications. Although adolescence is a risk factor for poor medication-taking, little is known about the patterns of adherence within individuals over time. This study aimed to examine the stability of adherence over time using three different assessment techniques. Sixty-six AYA transplant recipients and/or their caregiver completed interviews of adherence at baseline and at least one yr later. Serum immunosuppressant assay levels were collected via medical chart review. Non-adherence percentages based on AYA report, caregiver report, and bioassay did not differ from Time 1 to Time 2. However, correlations for these measures across time were non-significant. Further, the majority of AYAs shifted to a different adherence category from Time 1 to Time 2. Overall, these results demonstrate individual variability in non-adherence over the course of adolescence and young adulthood and highlight the importance of frequent assessment across time for solid organ transplant recipients., (© 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

This 18-month prospective investigation sought to examine changes in HRQOL over time for adolescent solid organ transplant recipients. Additionally, this study examined the relationship between adolescent and parent report of HRQOL and compared parent report of HRQOL to published normative data. Forty-eight adolescent-parent dyads completed the CHQ, a measure of HRQOL, at two time periods. Parent and adolescent reports of HRQOL were stable over time. ICCs between parent and adolescent reports were significant and moderate across most domains of HRQOL, with the exception of family cohesion, physical functioning, and bodily pain. However, mean differences indicated that parents perceived significantly worse self-esteem and general health perceptions compared to their adolescents. Compared to normative data, parents reported significantly lower HRQOL across several domains, including adolescents' physical functioning and the emotional impact of their adolescent's condition on themselves. However, parents also reported higher levels of family cohesion. Results indicate that assessment of HRQOL for transplant recipients should include multiple reporters and that HRQOL as reported by adolescents and parents is generally stable over time without intervention. Further research is needed to understand factors related to differential HRQOL outcomes., (© 2010 John Wiley & Sons A/S.)

As transplantation has progressively become a more viable option for children with life-threatening illness, ensuring that adolescents do not lose their new organ secondary to medication non-adherence is paramount. The first step to addressing non-adherence is adequate assessment of this construct. In this investigation, we introduce the MACS. The MACS includes self-report and drug assay levels. Self-report is a subjective measure with a low false-positive rate, but is vulnerable to social desirability. Drug assays are an objective measure of drug ingestion, but values suggestive of non-adherence may be influenced by medical complications and timing. The MACS builds on the strengths of both methods and attempts to contain their weaknesses. The sample in this study consisted of 82 adolescent solid organ transplant recipients. The non-adherence rate using the MACS in this sample was 61%. Initial data to support this system are promising. The occurrence of rejection episodes and mortality were significantly related to membership in the Genuinely Non-adherent category. Beyond providing initial support for the MACS, we discuss the clinical implications of this adherence classification system.

The aim of this study was to identify barriers to medication adherence in adolescent transplant recipients. Eighty adolescent transplant recipient families reported in an open-ended manner about barriers to medication adherence. These responses were then coded to reflect potentially important themes associated with medication adherence. The themes derived included: forgot/distracted, poor planning/scheduling issues, physical barriers/medication issues, and voluntary resistance/attempts to be normal. Inter-rater reliability for barrier coding was very high (k = 0.91). Patients who were classified as non-adherent reported significantly more overall barriers, more forgot/distracted barriers, and more voluntary resistance/attempts to be normal barriers than those classified as adherent. Non-adherence was also found to be more likely when adolescents, as opposed to parents, were responsible for administering the medication. Further, non-adherence was more likely when taking morning rather than evening doses. These findings are explained with an emphasis on potential remedies that directly address the stated barriers.

Developments in solid organ transplantation have resulted in improved survival for children with advanced kidney, liver, and heart disease; however, concerns have been raised regarding the quality of life of survivors. This study examined HRQOL in adolescent transplant recipients. We examined the influence of demographic, treatment regimen, and family factors on physical and mental health domains of HRQOL. The current single-center investigation involved 68 solid organ transplant recipients and their parents. All families participated in a structured interview to collect information on demographics, characteristics of the adolescents' disease and treatment regimen, family functioning, and HRQOL for parents and adolescents. Using hierarchical regression analyses, predictive models of physical functioning and mental health outcomes for adolescent transplant recipients were developed for parent-proxy and adolescent self-report. Perceived frequency of medication side-effects and family conflict significantly contributed to adolescent physical functioning and mental health outcomes. Taken together, transplant consequences and family environment significantly impact physical and mental health outcomes in adolescent transplant recipients. Our findings demonstrate the need for pharmacological considerations and psychological interventions to address these areas.