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.

Specific healthcare responsibilities and perceived transition readiness among adolescent solid organ transplant recipients: Adolescent and caregiver perspectives.

OBJECTIVE: Adolescents and young adults (AYAs) with solid organ transplants must attain responsibility for healthcare tasks during transition to adult healthcare. However, healthcare systems often initiate transfer based on age and not independence in care. This study examines specific responsibilities distinguishing AYA organ transplant recipients reporting readiness to transfer. METHODS: 65 AYAs (ages 12-21) with heart, kidney, or liver transplants and 63 caregivers completed questionnaires assessing AYA's transition readiness, healthcare responsibility, and executive functioning. Categorizations included mostly/completely ready versus not at all/somewhat ready to transition; responsibility was compared between groups. RESULTS: 42% of AYAs and 24% of caregivers reported AYAs as mostly/completely ready to transition. AYAs mostly/completely ready reported similar routine healthcare responsibility (e.g., medication taking, appointment attendance), but greater managerial healthcare responsibility (e.g., knowing insurance details, appointment scheduling), compared to AYAs not at all/somewhat ready to transition. CONCLUSIONS: All AYAs should be competent in routine healthcare skills foundational for positive health outcomes. However, the managerial tasks distinguish AYAs perceived as ready to transfer to adult healthcare. PRACTICE IMPLICATIONS: Emphasis on developing responsibility for managerial tasks is warranted. The Hierarchy of Healthcare Transition Readiness Skills is a framework by which AYA responsibility can be gradually increased in preparation for transfer.

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.

Looking beyond the individual: How family demands and capabilities affect family adjustment following pediatric solid organ transplant.

INTRODUCTION: Better family adjustment following pediatric solid organ transplantation has been associated with a number of beneficial medical and psychosocial outcomes. Yet few studies have examined which pretransplant variables are associated with posttransplant family adjustment. This information can aid in identifying families that may need support going into the transplantation process and those who are at lower risk of worse posttransplant adjustment. METHOD: The sample included 66 parents of children with solid organ transplants and 22 children with solid organ transplants. Information regarding demographic factors, parent and child emotional functioning, and child social support was collected during the child's pretransplant evaluation and information on family adjustment was collected 6 months after transplantation. RESULTS: Results indicated that pretransplant demands such as worse parent and child emotional functioning were related to worse family adjustment 6 months after transplantation. Pretransplant capabilities (i.e., higher family income, parent education level, parent marital status, child social support) were not associated with posttransplant family adjustment. DISCUSSION: Pretransplant family demands such as parent and child emotional functioning, as opposed to family capabilities, should be assessed by family health care team members prior to transplantation because they may be related to worse family adjustment after the transplant. We offer recommendations for ways to assess and, if indicated, intervene upon pretransplant family demands in an effort to decrease the risk of worse posttransplant family adjustment. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

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.

The interactive effect of parent personality and medication knowledge on adherence in children awaiting solid organ transplantation.

OBJECTIVE: The study aimed to examine parent personality factors as predictors of parent medication knowledge and parent-report of child medication adherence. METHOD: Seventy-eight parents (Mage = 37.68, 87.2% female) of children (Mage = 8.89, range: 0-20 years) undergoing evaluation for a solid organ transplant were recruited. Parents completed questionnaires about their personality, knowledge of their child's medications, and their child's level of medication adherence. RESULTS: Greater time since the child's diagnosis predicted lower levels of medication knowledge, while higher levels of Neuroticism and Extraversion predicted greater levels of medication knowledge. Greater medication knowledge predicted greater levels of medication adherence, with this effect being moderated by conscientiousness. Children of parents with low knowledge and low conscientiousness had the lowest levels of adherence. CONCLUSIONS: Parent personality is significantly related to medication knowledge and children's adherence prior to transplant. As parent personality is theoretically stable, Neuroticism (N), Extraversion (E), and Conscientiousness (C) serve as risk and protective factors that may influence medication knowledge and adherence even after transplantation. Parent medication knowledge and adherence are modifiable factors that would be appropriate targets for intervention during the pretransplant period. (PsycINFO Database Record

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.

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.

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.

Emotional functioning, barriers, and medication adherence in pediatric transplant recipients.

OBJECTIVE: This study assessed relationships among internalizing symptoms, barriers to medication adherence, and medication adherence in adolescents with solid organ transplants. METHOD: The sample included 72 adolescents who had received solid organ transplants. Multiple mediator models were tested via bootstrapping methods. RESULTS: Bivariate correlations revealed significant relationships between barriers and internalizing symptoms of depression, anxiety, and posttraumatic stress, as well as between internalizing symptoms and medication adherence. Barriers indicative of adaptation to the medication regimen (e.g., forgetting, lack of organization) were related to medication adherence and mediated the relationship between internalizing symptoms and medication adherence. CONCLUSIONS: These findings indicate that barriers may serve as a more specific factor in the relationship between more general, pervasive internalizing symptoms and medication adherence. Results may help guide areas for clinical assessment, and the focus of interventions for adolescent transplant recipients who are experiencing internalizing symptoms and/or who are nonadherent to their medication regimen.

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.

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.

Prospective comparison of parent and adolescent report of health-related quality of life in adolescent solid organ transplant recipients.

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.

The relationship between adolescent renal transplant recipients' perceived adversity, coping, and medical adherence.

The aim of the present study was to assess adolescent renal transplant recipients' perceived adversity (PA) for various aspects of living with a transplant, including its association with coping and medication non-adherence, from a theoretical perspective. Thirty-three adolescent renal transplant recipients were interviewed using structured questionnaires and medical record reviews. Health care provider ratings of adversity were also collected. Participants reported moderate levels of PA, with those who received a transplant at an older age reporting more adversity on several domains and girls reporting more adversity for missing school. Ratings of adversity for specific aspects of living with a transplant differed depending on age and medical factors and were related to specific coping strategies and measures of non-adherence. Consistent with the Self-Regulation Model, perceived consequences (represented as PA) appears to be related to coping and illness outcomes. Assessing PA and teaching appropriate coping strategies may yield better medical outcomes among this at-risk population.

Multidimensional Adherence Classification System: initial development with adolescent transplant recipients.

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.

Parent and patient perspectives on barriers to medication adherence in adolescent transplant recipients.

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.