Understanding disparities and barriers associated with pediatric transplant evaluation and time to listing: Moving toward a more comprehensive picture.

BACKGROUND: Delayed time to listing (TTL) for pediatric transplant patients is associated with increased risks of mortality and morbidity. The full range of health disparities, sociodemographic factors, and other barriers associated with delays in listing in the pediatric transplant candidate evaluation process has not been fully examined. METHODS: Retrospective chart reviews were conducted for 183 kidney, liver, and heart transplant candidates ages 0-18 who were referred for evaluation during 2012-2015. Demographic information and potential barriers (e g., social/medical factors, financial concerns) were gathered from pre-transplant evaluations and included in a comprehensive model to evaluate mechanisms that explain differences in TTL. Descriptive statistics, logistic regression models, Cox proportional hazards models, and path analysis were used for analyses. RESULTS: Candidates included 26.8% heart, 33.3% liver, and 39.9% kidney patients. The most common barrier to listing was financial (71.6%), followed by caregiver psychological or substance use (57.9%), and medical problems (49.7%). Higher age, kidney, and liver organ type (relative to the heart), and presence of social, medical, administrative/motivation, and financial barriers were all directly associated with longer TTL. Public insurance was indirectly associated with TTL through social, administrative/motivation, and financial barriers. Organ type was indirectly associated with TTL through financial barriers. CONCLUSIONS: Results suggest social problems, administrative issues, and financial issues act as mechanisms through which insurance type and liver transplant candidates face increased risk of delays in transplant listing time. There are numerous clinical implications and interventions that are warranted to reduce TTL among pediatric transplant candidates with co-occurring barriers.

Understanding Substance use Policies and Associated Ethical Concerns: A survey of Pediatric Transplant Centers.

Psychosocial risk factors, such as substance use, have been linked to poor post-transplant outcomes for solid organ transplant patients, including poor medication adherence, increased risk for rejection, and even graft failure. Despite universal consensus that substance use is an increasing problem among youth, many pediatric transplant centers do not have policies in place to address substance use and no universal guidelines exist regarding assessment during the pre-transplant evaluation in this population. An online survey was administered via REDCap™ and directed toward medical leaders (ie, medical and surgical directors) of national heart, kidney, and liver transplant centers. Questions examined the following: perspectives on the need for a universal transplant center policy on pediatric substance use, abuse, and dependence; timing and frequency of evaluation for substance use; specific substances which would elicit respondents' concerns; and ethical concerns surrounding substance use. Data were analyzed using descriptive statistics. Data were collected from 52 respondents from 38 transplant centers, with the majority (n = 40; 77%) reporting no substance use policy in place for pediatric transplant patients. However, many endorsed concerns if a pediatric patient was found to be using specific substances. Our findings further highlight the need for a universal substance use policy across pediatric solid organ transplant centers. The results from the distributed survey will help to provide guidelines and best practices when establishing a universal policy for substance use.

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.

Providers' perspectives on substance use among solid organ transplant candidates in a pediatric hospital.

INTRODUCTION: Substance use is prevalent among youth and often leads to impairment in multiple domains. Additionally, substance use may pose adverse health issues post-transplant. Yet, practices related to substance use among pediatric patients who require organ transplant remain inconsistent. In this study, providers were surveyed for their perspectives on substance use among solid organ transplant candidates within a pediatric hospital. METHODS: An online survey was administered to providers on the heart, kidney, and liver transplant teams at one tertiary pediatric care center located in the intermountain region of the United States (N = 50, 42% response rate). Providers answered questions about the need for a hospital-wide policy across heart, liver, and kidney transplant teams within this transplant center, timing of substance use evaluation, types of substances eliciting concerns based on organ, and recommended interventions. Data were analyzed using descriptive statistics. RESULTS: Providers felt strongly about the need for a policy to guide recommendations for substance use among transplant candidates. Providers wanted a hospital-wide substance use policy (84%) and a standardized measure for assessing substance use (98%). Respondents (98%) indicated that substance use should be assessed during the pretransplant evaluation. Respondents expressed varied concerns based on substance and organ type, and recommended interventions for patients to cease substance use prior to transplant listing. CONCLUSIONS: This study highlights the need for a clear, directive, hospital-wide policy and standardized procedure for evaluating substance use among adolescent solid organ transplant candidates nationally across pediatric transplant centers.