Pediatric Transplant Rating Instrument – A scale for the pretransplant psychiatric evaluation of pediatric organ transplant recipients

Abstract:  Although the majority of pediatric solid organ transplant centers in the United States employ psychosocial criteria to assess the suitability of potential transplant candidates, there are no standardized pretransplant psychosocial assessment measures. Assessment scales that have been developed were designed for adult transplant recipients and are not suitable for use in the pediatric population. The P-TRI was developed to address this gap in the pediatric pretransplant psychosocial evaluation. It is intended to identify areas of psychosocial vulnerability that may be associated with poor treatment adherence and to facilitate the development of informed and focused psychosocial interventions for pediatric patients before and after transplant surgery. Items on the rating instrument were generated based on a review of the major correlates of treatment adherence in the pediatric population. Data are currently being collected for further reliability and validity analyses.     

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.     

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.     

Psychosocial predictors of medication non‐adherence in pediatric organ transplantation: A systematic review

Adherence to immunosuppressant medication is critical to health and quality‐of‐life outcomes for children who have received a solid organ transplant. Research on the psychological and social predictors of medication adherence is essential to the advancement of pretransplant assessments and transplant psychosocial services. Despite the importance of identifying risk factors, the literature remains limited regarding psychosocial predictors of non‐adherence. A systematic search was conducted to identify studies of the psychosocial predictors of post‐transplant medication non‐adherence in pediatric solid organ transplantation. From 1363 studies identified in searches of empirical literature, a final sample consisted of 54 publications representing 49 unique studies. Findings regarding psychosocial predictors were inconsistent with non‐adherence associated largely with adolescence, racial/ethnic minority status, and presence of mental health issues. Familial predictors of non‐adherence problems included single‐parent households, lower socioeconomic status, lower family cohesion, presence of family conflict, and poor family communication. Several studies reported an association between non‐adherence and social pressures (eg, peer social interaction, wanting to feel normal) among adolescent transplant recipients. While significant methodological and substantive gaps remain in this body of knowledge, this review synthesizes current evidence for assessment for transplant clinicians and researchers.     

Inter-rater reliability of the Pediatric Transplant Rating Instrument (P-TRI): challenges to reliably identifying adherence risk factors during pediatric pre-transplant evaluations

The purpose of this study was to assess the inter-rater reliability of the P-TRI, a 17-item instrument developed to identify risk factors associated with poor treatment adherence in pediatric solid organ transplant candidates. Because factors influencing treatment adherence may vary with age, the 89 subject samples were divided into pre-adolescent (0-11 yr) and adolescent (12-19 yr) groups. Each subject received two independent P-TRI ratings based on pretransplant psychosocial assessments separately conducted by a PSYC and a SWTC. Inter-rater reliability was assessed using the delta statistic. Overall, agreement was higher in the pre-adolescent group, with delta>0.70 for five items and delta<0.30 for two items. For the adolescent group, one item had a delta>0.70 and seven items had a delta<0.30. Overall, PSYC P-TRI ratings indicated fewer areas of concern on items assessing family dynamics compared with SWTC P-TRI ratings, whereas the reverse was true for items related to psychiatric history. Results highlight the challenges of conducting a reliable pretransplant assessment of adherence-related risk factors and suggest the need for revisions to the P-TRI prior to its use in clinical practice.     

Organ transplants in children and adolescents: social, emotional and psychopathological problems

Organ transplantation has become the treatment of choice for a number of life-threatening childhood illnesses. Our review of the literature on the psychiatric aspects of organ transplantation in children and adolescents suggests that transplant programs routinely use psychosocial evaluations as a component of their assessment and to screen transplant recipients. This study explores 5 psychiatric issues raised by paediatric transplantation: 1) the role of family; 2) children's and adolescents' perception of illness; 3) pretransplant evaluation of a child's psychological state and environment; 4) the wait; 5) long-term effects. We conclude with recommendations for further research and the development of standardized assessment designed for the pediatric population.     

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.     

Unexpectedly high prevalence of pretransplant abnormal glucose tolerance in pediatric kidney transplant recipients

Several studies suggested that the incidence of new-onset diabetes following pediatric kidney transplantation has increased markedly in recent years, with reported incidence of up to 20%. However, limited information is available regarding the incidence and features of pretransplant status of abnormal glucose tolerance in pediatric kidney transplant recipients. We assessed the risk of 55 non-diabetic pediatric transplant recipients developing PTDM by performing OGTT prior to transplantation. For post-transplant immunosuppression, each patient received either a CsA- or a TAC-based regimen. However, recipients who had abnormal glucose tolerance in the pretransplant OGTT were allocated to the CsA-based regimen. The mean age of the patients was 9.7 +/- 5.4 yr while mean BMI was 16.5 +/- 3.3 kg/m2. FPG level before transplantation was within the normal limit in all patients, while the mean HbA1C value was 4.5. However, 18 of the 55 patients (32.7%) had abnormal glucose tolerance in the pretransplant OGTT, 13 (23.6%) had impaired glucose tolerance, and 5 (9.4%) had DM. PTDM developed in two patients on the TAC-based regimen with these patients having normal glucose tolerance prior to the transplant. In contrast, the 18 patients with abnormal glucose tolerance did not develop PTDM under CsA-based immunosuppression. Our results demonstrated an unexpectedly high prevalence of abnormal glucose tolerance in pretransplant OGTT even in a pediatric population. We believe that modification of post-transplant immunosuppression by the identification of high-risk patients using the pretransplant OGTT may minimize the development of new onset of PTDM.     

Solid-organ transplantation in childhood: transitioning to adult health care

Pediatric solid-organ transplantation is an increasingly successful treatment for solid-organ failure. With dramatic improvements in patient survival rates over the last several decades, there has been a corresponding emergence of complications attributable to pretransplant factors, transplantation itself, and the management of transplantation with effective immunosuppression. The predominant solid-organ transplantation sequelae are medical and psychosocial. These sequelae have a substantial effect on transition to adult care; as such, hurdles to successful transition of care arise from the patients, their families, and pediatric and adult health care providers. Crucial to successful transitioning is the ongoing development of a sense of autonomy and responsibility for one's own care. In this article we address the barriers to transitioning that occur with long-term survival in pediatric solid-organ transplantation. Although a particular transitioning model is not promoted, practical tools and strategies that contribute to successful transitioning of pediatric patients who have received a transplant are suggested.     

Adolescent transplant recipients as peer mentors: A program to improve self‐management and health‐related quality of life

The purpose of this study was to examine the safety, feasibility, acceptability, and preliminary efficacy of a cross‐age peer mentoring program created to improve adherence and psychosocial outcomes for pediatric liver transplant recipients. Twenty‐two participants were assigned to a “mentor now” or “mentor later” waitlist control group. Tacrolimus SD, a validated measure of adherence, was assessed for six months pre‐ and post‐intervention for both groups. Self‐report measures of self‐management and HRQOL were completed at recruitment and three months after training. Participant report indicated the acceptability of the intervention. Clinically significant improvement in adherence was detected. No significant changes on the psychosocial outcome measures at follow‐up were observed. This study demonstrated that an outpatient‐based mentoring program is a safe, feasible, and acceptable option to incorporate within a pediatric liver transplant program with potential for promising application in other transplantation populations as well. These results also suggest that the program may have been associated with meaningful improvement in adherence, although further evaluation is warranted.     

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.     

Transition to adult care for pediatric liver transplant recipients: the Western Australian experience

Transition to adult care is a vulnerable period for pediatric transplant recipients and is associated with reduced medication compliance, graft loss, and increased mortality. Psychosocial outcomes in young adults differ between pediatric transplant recipients and their healthy peers. We conducted a single‐center, retrospective cohort study of all pediatric liver transplant recipients who were transitioned through our center. This study aimed to assess the outcomes of transitioned pediatric liver transplant recipients at an Australian center, including mortality, adherence, and psychosocial morbidity. The 1‐ and 5‐year survival rates following transition were 100% and 92%, respectively. There were no episodes of late rejection. In total, 66.7% of patients were compliant with immunosuppression and 61.1% of patients were compliant with clinic attendance. There was a significant relationship between medication compliance and clinic attendance, as well as presence of psychological issues with clinic non‐attendance. Psychosocial outcomes were in keeping with age‐matched data from the general population. All patients were employed or studying following transition. This is the first study of its kind in the Australian population, and outcomes were superior to published international data. Despite the demonstrated good outcomes, transition programs may improve healthcare engagement in this cohort.     

Growing pains: non-adherence with the immunosuppressive regimen in adolescent transplant recipients

One-year graft and patient survival are better in adolescent transplant recipients (age 11-19 years) than in younger (age < 11 years) pediatric transplant recipients. However, several groups found that long-term outcomes (> i.e. 5 year post-transplant) in the adolescent age group are significantly worse than in younger transplant recipients. A behavioral factor that could explain an important part of the poorer clinical outcome in adolescent transplant recipients is non-compliance with medication taking. Adolescents, like all organ transplant recipients irrespective of their age, must adhere to a life-long immunosuppressive regimen in addition to other aspects of their therapeutic regimen. Therefore, adolescent transplant recipients, as all transplant patients, should be regarded as a chronically ill patient population in whom behavioral and psychosocial management is equally important as state-of-the-art medical management. This paper provides an overview of the current knowledge on prevalence, clinical consequences, and risk-factors for non-compliance with the immunosuppressive regimen in adolescent transplant recipients and offers some suggestions for adolescent-tailored interventions to improve medication adherence.     

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.     

The impact of recipient BKV shedding before transplant on BKV viruria,DNAemia, and nephropathy post‐transplant: A prospective study

We previously demonstrated that detectable BKV replication in donor urine pretransplant was significantly associated with post‐transplant recipient BKV viremia. In this 4‐year prospective study, we assessed whether recipient BKV replication pretransplant was associated with post‐transplant viremia/BKV nephropathy. We studied 220 primary adult and pediatric organ transplant recipients for 490 person‐years and 2100 clinical visits. BKV viruria was detectable in 28 (16%), 26 adults and two children; and viremia in none pretransplant. Post‐transplant viruria occurred in all recipients with pretransplant BKV viruria, significantly more than in recipients without pretransplant viruria on univariate (P<.005) and multivariate analysis including type of organ transplanted and immunosuppression type (P .008). Time to post‐transplant viruria was significantly shorter in recipients with pretransplant viruria (P .01). By univariate and multivariate analysis, BKV viruria in recipients pretransplant did not impact post‐transplant BKV viremia (P=.97 and .97, respectively) even when stratified by type of organ transplant (kidney P=.6; liver P=.5). The peak serum and urine BKV PCR post‐transplant were not significantly different in patients with pretransplant BKV viruria and no one developed BK nephropathy. In conclusion, recipient BKV viruria prior to transplant predicts post‐transplant viruria but not viremia or BKV nephropathy.     

Current status of heart transplantation in children: update 2003

Heart transplant is an effective therapy for children with end-stage heart disease. Success of this treatment depends on coordination and careful communication among the family, primary care physician, and transplant team. Primary care physicians play an essential role in the monitoring and management of the medical, nutritional, developmental, and psychosocial issues of pediatric heart transplant patients and their families (Box 3). Ongoing assessment of the child and parent's progress in adapting to transplant is crucial in order for appropriate referrals to occur. Relationships with the primary care team can improve medical outcomes for this complex group of patients and provide a framework for improved adherence to care.     

Variability in immunization guidelines in children before and after lung transplantation

Lung transplant candidates and recipients are at high risk of infections from vaccine-preventable diseases. However, well-established guidelines neither exist for pre- and post-transplant vaccination nor do monitoring guidelines for pediatric lung transplant recipients. To ascertain the current vaccination and monitoring practices of pediatric lung transplant centers, a self-administered questionnaire was distributed to the 18 pediatric lung transplant centers within the International Pediatric Lung Transplant Collaborative in April 2006. Sixteen of 18 centers (89%) surveyed responded. Pretransplant, national vaccination guidelines are followed. Eleven centers reported following standardized vaccination guidelines post-transplant. Vaccines were more commonly provided by the primary-care physician pretransplant (69%) rather than post-transplant (38%). Post-transplant, 50% of the centers recommend live vaccines for household contacts but not for the transplant recipient. Pretransplant monitoring of response to prior vaccination was performed inconsistently except for varicella (88%). Only 44% of the transplant centers measure for response to vaccination post-transplant, mostly hepatitis B. Current vaccination practices of pediatric lung transplant centers are heterogeneous. The lung transplant community would be well served by studies designed to evaluate the efficacy of vaccinations in this population.