Initial attendance and retention in adult healthcare as criteria for transition success among organ transplant recipients.

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.

Associations between executive functioning, personality, and posttraumatic stress symptoms in adolescent solid organ transplant recipients.

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 (Mage  = 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.

Caregiver-reported outcomes of pediatric transplantation: Changes and predictors at 6 months post-transplant.

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 (Mage  = 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.

Psychosocial Functioning Among Caregivers of Childhood Cancer Survivors Following Treatment Completion.

OBJECTIVE: To inform efforts to better support caregivers of children with cancer during the transition from treatment to survivorship, this study sought to characterize caregiver mental health-related quality of life (HRQOL) and anxiety, and examine the influence of family psychosocial risk and caregiver problem-solving on these outcomes. METHOD: Participants included 124 caregivers (child age M = 10.05 years; SD = 4.78), 12-19 months from the conclusion of cancer-directed treatment. Participants' self-reported mental HRQOL, anxiety, and problem-solving were compared with community norms using t-tests. Correlations and hierarchical multiple regressions examined the influence of psychosocial risk and problem-solving on caregiver mental HRQOL and anxiety. RESULTS: Overall, caregivers reported HRQOL and anxiety within normal limits. Caregivers also reported more adaptive patterns of problem-solving than community norms. Subsets of caregivers reported clinical levels of psychosocial risk (11%) and at-risk levels of mental HRQOL (2.5%) and anxiety (5.7%). Females reported greater anxiety than males. Psychosocial risk and negative problem orientation (NPO) were both related to poorer mental HRQOL and greater anxiety (r = .40-.51, p's < .001). Positive problem orientation related to better mental HRQOL and lower anxiety (r = .18-.21, p's < .05). Impulsivity/carelessness and avoidance were associated with greater anxiety (r = .19-.25, p's < .05). Only NPO accounted for additional variance in mental HRQOL and anxiety, over and above psychosocial risk and demographic characteristics. CONCLUSIONS: The majority of caregivers appear to be resilient and experience limited distress during the off therapy period. Targeting negative cognitive appraisals (NPO) through cognitive-behavioral therapy or problem-solving skills training may further improve caregiver psychosocial functioning.

Adherence Barriers for Adolescent and Young Adult Transplant Recipients: Relations to Personality.

OBJECTIVE: Much of the extant literature on adherence barriers has focused on modifiable factors (e.g., knowledge, social support); however, less is known about how barriers may be associated with relatively stable constructs, such as personality traits. The current study examines associations between personality (i.e., agreeableness, conscientiousness, neuroticism) and adherence barriers in a group of adolescent and young adult (AYA) solid organ transplant recipients. Demonstrating associations between barriers and personality may help in understanding why barriers are stable over time. Additionally, different personality traits may relate to different types of barriers. METHODS: The sample included 90 AYAs (Mage = 17.31; SD = 2.05; 58% male) who received a kidney (n = 36), liver (n = 29), or heart (n = 25) transplant at least 1 year prior to study enrollment. AYAs completed the Agreeableness, Conscientiousness, and Neuroticism scales from the NEO Five-Factor Inventory and the Adolescent Medication Barriers Scale (AMBS). RESULTS: Lower levels of agreeableness and conscientiousness and higher levels of neuroticism were related to higher self-reported barrier scores (AMBS; r's = .31- .53, p's < .001). The relations differed by personality factor and barrier type. CONCLUSION: Adherence barriers showed medium to large associations with personality traits that are known to be relatively stable. Our findings indicate that the temporal stability of barriers to adherence may be due in part to their association with relatively enduring personality characteristics.

Caregivers' Barriers to Facilitating Medication Adherence in Adolescents/Young Adults With Solid Organ Transplants: Measure Development and Validation.

OBJECTIVE: To evaluate the factor structure, validity, and reliability of the Caregiver Medication Barriers to Adherence Scale (CMBAS), which assesses caregivers' barriers to facilitating medication adherence in adolescent and young adults (AYAs) with solid organ transplants. METHODS: The sample included 93 caregivers of AYAs ages 12-22 years who received a liver, kidney, or heart transplant. Caregivers completed the CMBAS and surveys to assess its validity, including internalizing symptoms, personality traits (i.e., neuroticism, conscientiousness), and AYAs' nonadherence to immunosuppressant medications. AYA nonadherence to tacrolimus was objectively assessed via the Medication Level Variability Index (MLVI). RESULTS: Confirmatory factor analyses of the CMBAS revealed a two-factor model: Caregiver Emotional Distress and Caregiver Cognitive Burden/Responsibility. Higher CMBAS scores were related to higher levels of caregiver internalizing symptoms (rs = .28 to .30), neuroticism (r = .27), and caregiver proxy-reported immunosuppressant nonadherence (r = .27), as well as lower levels of caregiver conscientiousness (rs = -.25 to -.26). The CMBAS was not associated with the MLVI (rs = -.13 to -.16). CONCLUSIONS: The CMBAS demonstrated reliability and validity for caregivers of AYAs with solid organ transplants. Findings support the use of the CMBAS as a brief clinical screening tool to identify caregivers' barriers to facilitating AYA medication adherence.

Relations Between Tic Severity, Emotion Regulation, and Social Outcomes in Youth with Tourette Syndrome.

This study examined associations between tic severity, emotion regulation, social functioning, and social impairment in youth with Tourette Syndrome (TS). Emotion regulation was examined as a mediator between tic severity and social outcomes. Seventy-seven caregivers of youth with TS (M age = 13.1 years; SD = 2.29) were administered proxy-report measures of tic severity, emotion regulation, social functioning, and social impairment. Total and motor tic severity were negatively associated with emotion regulation and social functioning, and positively associated with social impairment (r's = 0.23 to 0.43). Vocal tic severity was not related to emotion regulation or social functioning, but was positively associated with social impairment (r = 0.36). Emotion regulation mediated the relations between total tic severity and both social outcomes, and motor tic severity and both social outcomes. Interventions that target emotion regulation would likely be a beneficial adjunctive therapy for youth with TS, and may result in improved social outcomes.

Sleep quality is associated with psychosocial functioning and health-related quality of life in pediatric transplant recipients.

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.

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.

A Systematic Review of Therapeutic Recreation Camp Impact on Families of Children With Chronic Health Conditions.

OBJECTIVE: Parents and siblings of children with chronic illnesses are at increased risk for experiencing psychosocial difficulties. Therapeutic recreation camps have become increasingly popular among these families. The current systematic literature review provides a synthesis of research on how these camps impact the parents and siblings of children facing a variety of chronic health conditions. METHODS: Databases searched: PubMed, PsycInfo, SportDISCUS, and Health Source Nursing/Academic Edition. Inclusion criteria included publication in a peer-reviewed journal between January 2000 and May 2018, written in the English language, and assessment of parent, sibling, or family outcomes. RESULTS: Twenty-one studies were included. Results indicated that camp attendance relates to positive changes in parent and sibling psychosocial outcomes. Additionally, parents report camp to be a place of social support and respite from daily life, and siblings find camp to be enjoyable and a place of belonging. Given the limited number of methodologically sound studies examining family functioning, it is not yet clear the extent to which camp influences family-level outcomes. CONCLUSION: Overall, camp appears to have a positive impact on parents and siblings across chronic illness populations. Future research should specifically assess family outcomes, including communication and family functioning, and the impact of incorporating well-defined interventions and education programming into the traditional therapeutic recreation camp experience.

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.

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.

The Influence of Environmental Consequences and Internalizing Symptoms on Children's Tic Severity.

Although there is evidence that environmental consequences for displaying tics and internalizing symptoms are related to tic severity in children with TS, less is known about the inter-relationships of these variables or how these factors jointly contribute to tic severity. This study included 45 children with Tourette syndrome. Caregivers reported on children's environmental consequences for displaying tics, internalizing symptoms, and tic severity. Results indicated that children with higher levels of internalizing symptoms experienced significantly more environmental consequences for displaying tics. Children with higher levels of separation anxiety symptoms demonstrated significantly greater tic severity. Environmental consequences for displaying tics accounted for significantly more variance in predicting tic severity than anxiety symptoms. This preliminary evidence suggests that environmental consequences for displaying tics, such as receiving accommodations or attention from others, have a greater influence on children's tic severity than emotional factors.

Resilience, emotion processing and emotion expression among youth with type 1 diabetes.

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. R2 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.

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.

Longitudinal stability of medication adherence among adolescent solid organ transplant recipients.

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.

Clinical cutoffs for adherence barriers in solid organ transplant recipients: how many is too many?

OBJECTIVE: The current study used multiple statistical methods to determine empirically derived and clinically relevant cutoff scores on the Adolescent Medication Barriers Scale (AMBS) and Parent Medication Barriers Scale (PMBS) to detect adolescents and young adults with solid organ transplants who experienced medication nonadherence or negative medical outcomes. METHODS: Participants included 71 patients and 80 caregivers. Cutoff scores were determined via receiver operating characteristic curve analyses, t-test analyses, and the sensitivity and specificity of using certain cutoff scores. RESULTS: AMBS scores of ≥3 barriers and PMBS scores of ≥2 barriers were determined as the ideal cutoffs for identifying patients meeting criteria for the outcome variables. CONCLUSIONS: Clinicians should consider using these recommended cutoff scores when assessing adherence barriers in adolescents and young adults with solid organ transplants and their families. Patients or caregivers endorsing barriers above the cutoffs may benefit from further assessment or intervention to address barriers, nonadherence, or related medical issues.