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.     

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.     

The psychosocial challenges of solid organ transplant recipients during childhood

Annunziato RA, Jerson B, Seidel J, Glenwick DS. The psychosocial challenges of solid organ transplant recipients during childhood. Abstract: A large proportion of pediatric solid organ transplant recipients are young children, yet dedicated studies on the challenges faced by these patients are sparse. The present article aims to provide a summary of key considerations for pediatric solid organ transplant teams, describing what challenges are more likely for younger patients and how they might identify and address these circumstances. Our findings suggest that the mental health of patients and caregivers, issues at school, neurocognitive difficulties, and self-management are areas of particular relevance for children. We offer several recommendations that stem from these identified areas of concern. Dedicated focus on the well-being of younger patients could in the long-term stave off adverse events that are often associated with adolescence. In the short-term, certainly intervening in any of these domains could lead to improved quality of life during childhood.     

Imaging in pediatric renal transplantation

Renal transplantation is the therapy of choice in children with ESKD. Radiological investigations are required in both pre‐ and post‐transplant assessment, although there is paucity of both consensus‐based statements and evidence‐based imaging guidelines in pediatric renal transplantation. The phases of pediatric ESKD management that require imaging are pretransplantation recipient assessment and post‐transplantation surveillance for detection of potential complications. We present suggestions for imaging algorithms for both pre‐ and post‐transplant assessment in pediatric renal transplant recipients.     

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.     

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.     

Quality of life in pediatric liver transplantation in a single‐center in South America

Sanchez C, Eymann A, De Cunto C, D’Agostino D. Quality of life in pediatric liver transplantation in a single‐center in South America.
Pediatr Transplantation 2010: 14: 332–336. © 2009 John Wiley & Sons A/S. Abstract: HRQOL in children after LT has not been systematically measured in transplant recipients from South American countries. The aim of this study was to determine the HRQOL using a validated measure for children. The CHQOL‐PF50 was completed by the parents of 54 patients after the clinical assessment. Subscale mean scores were compared with both a normal population (n = 274) and a group of chronic illness patients with Juvenile Idiopathic Arthritis (n = 23). Compared with the normal population, LT recipients had lower subscales scores for general health perceptions, role/social emotional, mental health, and parental impact on time. Bodily pain was significantly lower in our study group. Both mean physical and psychosocial summary scores were lower compared to the normal population but similar to the JIA group. Within the LT population, gender, original diagnosis, type of immunosuppression, type of transplant and time elapsed since LT did not significantly influence any of the summary scores. Our study showed LT children’s physical and psycho‐social areas were lower compared with those of the general population. LT children had less limitations due to pain. Family functioning appeared normal.     

Pediatric Transplant Rating Instrument - a scale for the pretransplant psychiatric evaluation of pediatric organ transplant recipients.

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.     

Psychosomatic disorders in pediatrics

Psychosomatic symptoms are by definition clinical symptoms with no underlying organic pathology. Common symptoms seen in pediatric age group include abdominal pain, headaches, chest pain, fatigue, limb pain, back pain, worry about health and difficulty breathing. These, more frequently seen symptoms should be differentiated from somatoform or neurotic disorders seen mainly in adults. The prevalence of psychosomatic complaints in children and adolescents has been reported to be between 10 and 25%. These symptoms are theorized to be a response to stress. Potential sources of stress in children and adolescents include schoolwork, family problems, peer pressure, chronic disease or disability in parents, family moves, psychiatric disorder in parents and poor coping abilities. Characteristics that favour psychosomatic basis for symptoms include vagueness of symptoms, varying intensity, inconsistent nature and pattern of symptoms, presence of multiple symptoms at the same time, chronic course with apparent good health, delay in seeking medical care, and lack of concern on the part of the patient. A thorough medical and psychosocial history and physical examination are the most valuable aspects of diagnostic evaluation. Organic etiology for the symptoms must be ruled out. Appropriate mental health consultation should be considered for further evaluation and treatment.     

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.     

The start of the transplant journey: Referral for pediatric solid organ transplantation

The focus of the majority of the psychosocial transplant literature is on post‐transplant outcomes, but the transplant journey starts much earlier than this, at the point when transplantation is first considered and a referral for transplant evaluation is made. In this review, we cover information regarding the meaning of the referral process for solid organ transplantation. We discuss various factors of the referral for transplantation including the impact of referral on the pediatric patient and the family, potential expectations and misconceptions held by pediatric patients and parents, the role of health literacy, decision‐making factors, and the informational needs of pediatric patients and parents. We elucidate steps that providers can take to enhance transplant referral and provide suggestions for much needed research within this area.     

Outcomes in pediatric solid-organ transplantation

LaR Pediatric solid-organ transplantation is an increasingly successful treatment for organ failure. Five- and 10-yr patient survival rates have dramatically improved over the last couple of decades, and currently, over 80% of pediatric patients survive into adolescence and young adulthood. Waiting list mortality has been a concern for liver, heart, and intestinal transplantation, illustrating the importance of transplant as a life-saving therapy. Unfortunately, the success of pediatric transplantation comes at the cost of long-term or late complications that arise as a result of allograft rejection or injury, immunosuppression-related morbidity, or both. As transplant recipients enter adolescence treatment, non-adherence becomes a significant issue, and the medical and psychosocial impacts transition to adulthood not only with regard to healthcare but also in terms of functional outcomes, economic potential, and overall QoL. This review addresses the clinical and psychosocial challenges encountered by pediatric transplant recipients in the current era. A better understanding of pediatric transplant outcomes and adult morbidity and mortality requires further ongoing assessment.     

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.     

Post-transplant diabetes mellitus in children following renal transplantation

Abstract:  PTDM plays a role in chronic allograft nephropathy and decreases graft and patient survival. Considering the serious outcome of chronic hyperglycemia, the importance of early recognition and the few data in children, in this retrospective analysis we studied the characteristics and risk factors of PTDM in 45 pediatric renal transplant recipients receiving Tac or CyA-based immunosuppression. Fasting blood sampling and OGTT were performed. PTDM has been developed in six patients (13%), while seven children (16%) had IGT, with the overall incidence of a glucose metabolic disorder of 29% in pediatric renal transplants. Patients in the PTDM + IGT group were younger and had higher systolic blood pressure and serum triglyceride level than children with normal glucose tolerance. Multivariate analysis identified Tac treatment, Tac trough level, steroid pulse therapy and family history of diabetes to be associated with the onset of PTDM. In pediatric renal transplants, OGTT and frequent assessment of blood glucose levels might be essential not only in the post-transplant management, but also prior to transplantation, particularly with family history of diabetes. Careful monitoring and modified protocols help to minimize the side effects of Tac and corticosteroids.     

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.     

Preoperative pulmonary assessment of children for liver transplantation

Abstract:  Pulmonary assessment should be part of the preoperative investigation of pediatric patients with chronic liver disease undergoing liver transplantation, as it allows the identification of pulmonary alterations that influence candidacy for transplantation and survival. To describe pulmonary changes found in pediatric patients who were candidates for liver transplantation. Retrospective study of 17 pediatric liver transplant candidates undergoing preoperative pulmonary evaluation assessing pulmonary clinical data, arterial blood gas analysis, CXR, respiratory function test by spirometry, pulmonary scintigraphy, and CEE. Ten patients presented normal chest roentgenograms. The most common radiographic change was interstitial infiltrate in the lung bases. Of the five patients with PaO₂ <70 mmHg, four had cyanosis and dyspnea and two were diagnosed with HPS with intrapulmonary shunt evidenced by contrast echocardiogram. Two patients presented with intrapulmonary shunt but without hypoxemia. Spirometry was normal in six patients, restrictive disturbance was evidenced in one patient, obstructive in three, and combined in two. The most common scintigraphic change was heterogeneous pulmonary perfusion. Pulmonary assessment should be performed routinely in pediatric patients prior to liver transplantation, even in asymptomatic patients. Pulmonary assessment may indicate changes such as HPS that can increase postoperative morbidity/mortality.