Psychosocial predictors of medication adherence in pediatric heart and lung organ transplantation

Few studies have identified the psychosocial characteristics of those children and their families associated with future non‐adherence to immunosuppressive medications following a heart or lung transplant. UNOS data and medical records information were used to test the association between patient and family psychosocial characteristics and medication adherence. Medication adherence outcomes were obtained using the physician assessments in the UNOS data and measured through patient‐level standard deviation scores of immunosuppressive medication blood levels. Complete data were collected on 105 pediatric heart and lung transplant recipients and their families. Multivariate, stepwise analyses were conducted with each adherence outcome. Physician reports of adherence were associated with age of the child at transplantation, parental education, two‐parent families, significant psychosocial problems, and the pretransplant life support status of the child. The resulting model (χ²=28.146, df=5, P<.001) explained approximately 39.5% of the variance in physician reports of adherence (Nagelkerke r²=.395). Blood level standard deviation scores were predicted by age at transplant (F=5.624, P=.02, r²=.05). Results point to the difficulties experienced by children and families when undergoing a heart or lung transplantation. Efforts to develop standardized and evidence‐based pretransplant psychosocial assessments in pediatric populations are suggested, especially those surrounding familial risk factors.     

Psychological functioning and psychosocial issues in pediatric kidney transplant recipients

Research demonstrates that psychological factors are important for positive transplant outcomes, though there is little literature that synthesizes these factors in a comprehensive model among pediatric kidney transplant patients. This review analyzes psychological and psychosocial factors related to medical outcomes and overall well‐being post‐transplant by utilizing the PPPHM and referencing the existing literature on risk and resilience. Pediatric kidney transplant recipients are more susceptible to mental health concerns such as depression, anxiety, and ADHD, as well as developmental and neurocognitive delays, compared to healthy peers. Complex medical care and psychosocial needs for patients have implications for family functioning, parental and sibling mental health, and youth readiness to transition to adult care. It is important to carefully monitor patient functioning with empirically validated tools and to intervene in a multidisciplinary setting as early as possible to identify patients at risk and reduce potential negative impact. Psychologists are uniquely trained to assess and address these issues and are a valuable component of multidisciplinary, culturally competent care. While research in this expansive field is improving, more data are needed to establish gold standard approaches to mental health and psychosocial care in this population.     

Understanding the pathway between the transplant experience and health-related quality of life outcomes in adolescents

Abstract:  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.     

Best practices in the pediatric pretransplant psychosocial evaluation

Assessment of psychosocial functioning is an often‐included component of the pretransplant evaluation process. This study reviews several domains of assessment that have been related to post‐transplant outcomes across solid organ transplant populations. These include evaluation of patient and family past adherence, knowledge about the transplantation process, and their neurocognitive, psychological, and family functioning. To date, few comprehensive pretransplant evaluation measures have been standardized for use with children; however, several assessment measures used to evaluate the aforementioned domains are reviewed throughout the study. Additionally, this article discusses some developmental, illness‐specific, and cultural considerations in conducting the psychosocial evaluation. We also discuss ethical issues specific to the pediatric psychosocial evaluation. Recommendations are advanced to promote a comprehensive evaluation that identifies family strengths and risk factors as they begin the transplant journey.     

Psychological functioning of pediatric lung transplant candidates/recipients: a review of the literature

Although lung transplants are performed in children, experience with the pediatric population remains limited. There is growing interest in studying the psychological functioning and quality of life in these patients following transplant. There is a body of literature about quality of life in adult lung transplant recipients, but little is known about how pediatric patients and their families function psychologically after transplant. The current article summarizes the pediatric literature with respect to psychological outcomes for transplant recipients and their parents and points to areas where additional research is needed.     

New insights into family functioning and quality of life after pediatric liver transplantation

Denny B, Beyerle K, Kienhuis M, Cora A, Gavidia‐Payne S, Hardikar W. New insights into family functioning and quality of life after pediatric liver transplantation. Abstract: Thorough research of the medical aspects of pediatric liver transplantation has given way to recent interest in the impact of the transplantation process on the QOL of recipients and their families. In this cross‐sectional study, we compared the family functioning and QOL of children (n = 30) aged between three and 16 yr (M = 10.10, s.d. = 3.62) who had received a liver transplant in the previous 1–12 yr (M = 5.31, s.d. = 3.44) with non‐transplant children (n = 33), as reported via parent proxy. Results showed that parents of pediatric liver transplant recipients made significantly more adjustments to family routines to accommodate their children, particularly in relation to childcare. Impaired family functioning was also found to be associated with decreased QOL. These preliminary findings of relative deficits in family functioning may inform psychosocial interventions to assist pediatric liver transplant patients and their families. Further investigation beyond a single‐center study incorporating subjective information from pediatric patients and their parents is recommended.     

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.     

Assessing associations between medication adherence and potentially modifiable psychosocial variables in pediatric kidney transplant recipients and their families

Post-transplant immunosuppressant (IS) medication adherence is essential for long-term graft survival and relatively little is known about psychosocial barriers that interfere with optimum medication adherence in pediatric kidney transplant patients. The objective of this prospective observational cohort study was to assess the impact of modifiable psychosocial variables on medication adherence. Our hypothesis was that parental stress, dysfunctional parent-child interactions and child behavior problems would be associated with poorer medication adherence. Thirteen pediatric kidney transplant patients and their caregivers were enrolled. Transplant recipients who were able to read and caregivers of all the transplant recipients completed behavioral and attitudinal surveys. A subgroup of seven families dispensed their primary IS medication from an electronic monitoring vial (MEMS Smart Cap). For these patients, medication adherence was calculated by computing a ratio of the medication taken divided by the prescribed dose. In addition, for the entire group, serial IS levels were reviewed by two board certified pediatric nephrologists who categorized all 13 transplant recipient families as either 'probably adherent (PA)' or 'possibly non-adherent (PNA)'. Pearson correlation coefficients and independent samples Student t-tests were used to assess the association between medication adherence and psychosocial variables measured by standardized questionnaires. In this study, elevated parental stress, dysfunctional parent-child interactions, and child behavior problems were associated with poorer medication adherence. In addition, we found evidence to support the relationship between subjective dissatisfaction with appearance and poorer medication adherence. These findings suggest that pre-transplant recipient evaluations of risk factors for poor adherence are warranted.     

A systematic review of parent and family functioning in pediatric solid organ transplant populations

The process of pediatric solid organ transplantation (SOT) places new and increased stressors on patients and family members. Measures of family functioning may predict psychological and health outcomes for pediatric patients and their families, and provide opportunity for targeted intervention. This systematic review investigated parent and family functioning and factors associated with poorer functioning in the pediatric SOT population. Thirty‐seven studies were identified and reviewed. Studies featured a range of organ populations (eg, heart, liver, kidney, lung, intestine) at various stages in the transplant process. Findings highlighted that parents of pediatric SOT populations commonly report increased stress and mental health symptoms, including posttraumatic stress disorder. Pediatric SOT is also associated with increased family stress and burden throughout the transplant process. Measures of parent and family functioning were associated with several important health‐related factors, such as medication adherence, readiness for discharge, and number of hospitalizations. Overall, findings suggest that family stress and burden persists post‐transplant, and parent and family functioning is associated with health‐related factors in SOT, highlighting family‐level functioning as an important target for future intervention.     

Predictors of cardiac allograft vasculopathy in pediatric heart transplant recipients

CAV remains a leading cause of late graft loss and mortality among survivors of pediatric heart transplantation. We sought to define the incidence of CAV and identify its predictors in pediatric heart transplant recipients. The OPTN/UNOS database was analyzed for pediatric recipients who underwent heart transplant between 1987 and 2011. The primary end‐point is time from heart transplantation to development of CAV (CAV‐free survival). To identify predictors of CAV‐free survival, demographic and transplant data were analyzed by the Kaplan–Meier survival method and Cox proportional hazards regression. Of 5211 pediatric heart transplant recipients with at least one‐yr follow‐up, the incidence of CAV at five, 10, and 15 yr was 13%, 25%, and 54%, respectively. Multivariate analysis found that risk of CAV was associated with the following variables: Recipient age 1–4 yr (HR 1.25), 5–9 yr (1.45), 10–18 yr (1.83), donor age >18 yr (1.34), re‐transplantation (2.14), recipient black race (1.55), and donor cigarette use (1.54). Older recipient and donor age, recipient black race, donor cigarette use, and re‐transplantation were highly associated with shorter CAV‐free survival.     

Behavioral health care in solid organ transplantation in a pediatric setting

This study examined the demographic, medical, and psychiatric characteristics of transplant patients across organ groups seen by transplant psychology/psychiatry clinicians at a pediatric institution between 2008 and 2014. Chart reviews were conducted to better understand the behavioral health care provided to SOT patients and the role of transplant‐dedicated psychology and psychiatry clinicians. Transplant psychology/psychiatry was consulted a total of 1060 times on 399 unique SOT patients over a 6‐year period. There were no significant differences in the distribution of age, sex, or ethnicity across organ groups. Common reasons for a consultation included pretransplant evaluation, anxiety, depression, agitation, and general coping. Rates varied by organ groups. Twenty percent of consults also received a psychopharmacological evaluation, with differences in rates between organ groups. Roughly one‐third of patients required high frequency of transplant psychology/psychiatry involvement. Lung and heart patients had the highest utilization. Psychiatric diagnosis rates were identified, with adjustment (41.0%) and anxiety disorders (30.1%) being the most common. Pediatric psychology and psychiatry clinicians offer developmentally informed biopsychosocial approaches to treatment for SOT patients. Clarifying the prevalence and nature of behavioral health care provided by organ group can help pediatric providers better understand appropriate psychosocial interventions and resources utilized by this patient population and ultimately guide centers toward a more unified approach to care.     

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

Fredericks EM, Dore‐Stites D, Well A, Magee JC, Freed GL, Shieck V, Lopez MJ. Assessment of transition readiness skills and adherence in pediatric liver transplant recipients.
Pediatr Transplantation 2010: 14:944–953. © 2010 John Wiley & Sons A/S. Abstract: To examine transition readiness, adherence, and health outcomes in pediatric liver transplant recipients using a clinically administered screening measure. Seventy‐one pediatric liver transplant recipients (11–20 yr) and 58 parents completed a clinic‐based TRS measuring perceived and demonstrated self‐management skills, AoR for health‐related tasks, regimen knowledge, and psychosocial adjustment. Adherence was measured using s.d. of immunosuppressants, proportion of immunosuppressant blood levels out of target range, and clinic attendance. Health outcomes included liver test panels, biopsies, rejection episodes, and hospitalizations. Results indicate that all domains of transition readiness, with the exception of demonstrated skills, and non‐adherence were positively correlated with age. Proportion of immunosuppressant blood levels below target range was positively correlated with self‐management skills and increased responsibility for medication tasks. Parent regimen knowledge was associated with clinic attendance. Health outcomes were significantly related to medication non‐adherence, but not to transition readiness domains. Medication adherence is considered to be a key factor in the transition from pediatric to adult‐centered transplant care. Non‐adherence is associated with an increased risk for medical complications and is potentially modifiable. Interventions to promote self‐management skills and adherence should be an essential component of transition planning.     

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.     

Percutaneous coronary intervention using drug‐eluting stents in pediatric heart transplant recipients

Abstract: PCI has been used for palliation of CAV in adults, but there are limited data available in children. We sought to evaluate our experience with PCIs for CAV in pediatric heart transplant recipients. Retrospective review of the medical records of all four patients who were diagnosed with CAV, including demographic data and catheterization reports was performed. Of the 149 pediatric heart transplant recipients followed at our institution, 10 were identified with CAV. Four of these 10 underwent 12 PCI procedures for CAV. One donor heart had documented coronary artery disease. Two patients had significant risk factors for coronary artery disease including morbid obesity, hyperlipidemia, and systemic hypertension. PCI involved deployment of bare metal stents (n = 2), paclitaxel‐eluting stent (n = 6), and sirolimus‐eluting stents (n = 4) with procedural success in all and no early or late mortality. One procedure was complicated by coronary dissection that was successfully treated with stent placement. One patient has been re‐transplanted while the other three are not candidates for re‐transplantation and have remained asymptomatic as palliation with PCI. PCI using coronary stents is a safe and effective palliative measure for CAV in pediatric heart transplant recipients.     

Pediatric health-related quality of life after intestinal transplantation

As outcomes after ITx improve, greater emphasis is needed on HRQOL. The primary aims of this study were to (i) assess the feasibility of measuring HRQOL in pediatric ITx recipients, (ii) measure HRQOL using validated instruments, and (iii) compare HRQOL in ITx recipients to healthy normal (NL) children. The CHQ and Pediatric Quality of Life (PedsQL4.0) instruments were administered to both patients and parents at outpatient visits. All 24 eligible patients were enrolled. The median age at study enrollment was 6.0 yr (range: 2-18 yr), and the median time from transplant to study enrollment was 2.8 yr (range: 0.5-11.8 yr). The majority of subjects were male (58%), Latino (58%), and liver-inclusive (92%) recipients. For CHQ and PedsQL4.0, parental responses were significantly lower in multiple categories including physical health and social functioning compared to healthy norms. Patient responses were not different from NL using CHQ but using PedsQL4.0 were significantly lower in the school functioning subcategory and psychosocial health summary score. HRQOL as reported by children and families after ITx is significantly lower in multiple categories compared to NL.     

Psychosocial assessment prior to pediatric transplantation: A review and summary of key considerations

Annunziato RA, Fisher MK, Jerson B, Bochkanova A, Shaw RJ. Psychosocial assessment prior to pediatric transplantation: A review and summary of key considerations.
Pediatr Transplantation 2010: 14: 565–574. © 2010 John Wiley & Sons A/S. Abstract: Prior to listing for transplantation, patients participate in a comprehensive, multidisciplinary evaluation. One component of this process, incorporated by the vast majority of transplant centers, is a psychosocial assessment conducted by a mental health professional. The primary objectives of a pre‐transplant psychosocial assessment are to identify risk factors for difficulty adjusting post‐transplant as well as behaviors that may compromise transplantation outcomes. This paper aims to provide a summary of key considerations for pediatric transplant teams describing what this assessment might include, when it should be performed, training requirements for the evaluators, how results of the evaluation might best be utilized and suggestions for optimal patient preparation. Our findings suggest that the evaluation, which can be conducted by a variety of professionals, should include assessment of patient knowledge and motivation for transplant, mental health and substance abuse history, presence or absence of family and social support, availability of financial resources, past history of treatment adherence, and the quality of the family’s relationship with the transplant team. Repeat assessments and utilizing the initial evaluation for outcome assessment should be considered. Finally, the evaluation offers a unique opportunity for better preparing patients and families for transplantation.     

Generalized and specific anxiety in adolescents following heart transplant

Mental health concerns are associated with worse outcomes after adult heart transplant. Illness‐specific anxiety is associated with worsened psychological well‐being after other solid organ transplants but has never been characterized after pediatric heart transplant. This single‐center cross‐sectional study aimed to evaluate illness‐specific and generalized anxiety after heart transplantation in adolescents. A novel 12‐item PHTF, GAD‐7, and the PedsQL were administered. Univariate associations of demographics, clinical features, and medication adherence as measured by immunosuppression standard deviation with the PHTF and GAD‐7 scores were evaluated. Internal consistency and validity of the PHTF were examined. In total, 30 patients participated. The most common illness‐specific fears were retransplantation, rejection, and more generally post‐transplant complications. The PHTF had good internal consistency (Cronbach α = .88). Construct validity was demonstrated between PHTF and GAD‐7 (r = .62) and PedsQL (r = ?.54 to ?.62). 23% endorsed moderate to severe generalized anxiety symptoms. More severe symptoms were associated with older age at survey (P = .03), older age at listing (P = .01) and having post‐transplant complications (P = .004). Patients with moderate or severe symptoms were more likely to report late immunosuppression doses (P = .004). Illness‐specific and generalized anxiety may be prevalent after pediatric heart transplant. Screening for anxiety in adolescents post‐transplant may identify those at risk for adverse outcomes including non‐adherence. The PHTF is a brief, valid, and reliable instrument identifying illness‐specific anxiety in this population.     

Physical activity and its correlates in a pediatric solid‐organ transplant population

PA has been shown to have benefits in SOT patients. Studies assessing physical activity levels and its correlates in a pediatric solid‐organ transplant population are limited. The aim of this study was to assess PA levels and identify baseline and contemporaneous factors that contribute to PA in a pediatric SOT population. A retrospective cross‐sectional review was performed on 58 pediatric transplant patients (16 heart, 29 kidney, and 13 liver transplant). PA was measured by PAQ‐C or PAQ‐A. Demographics, baseline, and contemporaneous factors were collected. There were no significant differences in baseline and contemporaneous characteristics between heart, kidney, and liver transplant recipients. SOT recipients were 15.2 [12.3‐17.3] years old at time of completing the PAQ. Median PAQ score was 2.2 [1.7‐2.9]. There were no significant differences in PAQ scores between organ transplant type or between genders. Lower PAQ score was associated with sensory disability (9 vs 49 without disability; P = <.01) and age at time of completing the PAQ (r = ?.50, P = <.01). These results suggest that older age at time of completing the PAQ and presence of sensory disability may influence PA levels in the pediatric SOT population.     

A translational and systemic approach to transferring liver transplant recipients from pediatric to adult‐oriented care settings

Annunziato RA, Hogan B, Barton C, Miloh T, Arnon R, Iyer K, Kerkar N. A translational and systemic approach to transferring liver transplant recipients from pediatric to adult‐oriented care settings.
Pediatr Transplantation 2010: 14:823–829. © 2010 John Wiley & Sons A/S. Abstract: The purpose of this review is to (i) describe systemic changes made in our clinical practice to facilitate transfer of transplant recipients from the pediatric to the adult service and (ii) provide the rationale for instituting these organizational changes. To determine specific areas patients struggle to master, a survey assessing behaviors indicative of health care management was administered in pediatrics. Based on the results of the survey, all liver transplant recipients who transfer out of pediatrics are given a comprehensive clinical protocol, which includes a transfer checklist containing prerequisite items derived from our prior work. Patients are furthermore invited to enroll in a research study prospectively tracking both medical and psychosocial outcomes at six‐month intervals. Data are discussed by the pediatric and adult teams, and additional adjustments to the transfer process are implemented in response. A summary of our clinical interventions and the resources required for implementation are presented. In conclusion, preliminary studies have demonstrated that transplant recipients are vulnerable to disruptions in health care management when they transfer out of pediatrics. This study describes one site’s translational efforts to improve the transfer process for both the recipients and the clinicians, thus improving outcomes.