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.

Perceptions of solid organ transplant recipients regarding self-care management and transitioning.

Negative outcomes are consistently reported when adolescent solid organ transplant recipients are transitioned to adult transplant programs. The purpose of this quality improvement project was to understand the perceptions of patients and their parents about self-care management at transition. Solid organ transplant recipients, 16 to 22 years of age (n = 10), in a 396-bed pediatric hospital in the northeastern United States and their parents (n = 10) completed semi-structured interviews regarding health, transplant history, and participants' thoughts and feelings related to transitioning to adult transplant centers. Qualitative data were analyzed using the phenomenological method with NVIVO software to identify themes across interviews. Themes included negative perceptions of adult transplant centers due to anxiety regarding the competencies of new providers in caring for the child's medical needs, unfamiliarity with adult medical providers, fear of letting go and assuming greater responsibility, and discrepancies between providers, parents, and patients. Clinical implications are discussed, including the creation of a pediatric transition clinic and strategies for providers to promote self-care management among patients.

Stress and coping of parents of young children diagnosed with bladder exstrophy.

PURPOSE: Previous studies have examined the psychological impact that living with bladder exstrophy has on patients. However, little is known about how parents of children diagnosed with this condition are affected. We examine how parents caring for children diagnosed with bladder exstrophy are impacted. An increased understanding of the stressors these parents face may lead to the development of appropriate parenting interventions, which may ultimately affect psychosocial and health outcomes in the child. MATERIALS AND METHODS: All parents of children 10 years and younger treated for bladder exstrophy at our institution were selected from a centralized database. A total of 20 parents (65% of the eligible population) completed standardized questionnaires assessing pediatric specific parenting stress (Pediatric Inventory for Parents) and coping (Ways of Coping Questionnaire). RESULTS: Parents identified several common stressors (eg worrying about the long-term impact of the illness, helping the child with his/her hygiene needs) and overall reported using adaptive ways of coping (ie planful problem solving, seeking social support, positive reappraisal). However, when they experienced increased stress they reported using more nonadaptive ways of coping (ie escape/avoidance and distancing). CONCLUSIONS: Overall the findings of our study suggest that parents of children diagnosed with bladder exstrophy experience a significant amount of stress. In fact, parents in our study indicated experiencing similar frequency and difficulty of stress compared to parents of the same aged children diagnosed with type 1 diabetes. Increased stress can have negative consequences for parents and children. Future directions and implications of these findings are discussed.

Impact of medication non-adherence on survival after pediatric heart transplantation in the U.S.A.

BACKGROUND: Medication non-adherence (NA) can result in life-threatening illness in children after solid-organ transplantation. Little is known about the incidence, risk factors and outcomes of NA in large numbers of pediatric heart transplant (HT) recipients. METHODS: Organ Procurement Transplant Network (OPTN) data were used to identify all children <18 years of age in the U.S.A. who underwent HT from October 1999 to January 2007. Cox proportional hazards analysis was used to identify risk factors for NA and the effect on graft survival. RESULTS: Of 2,070 pediatric heart transplants performed the median age at transplant was 6 years (interquartile range [IQR] 0 to 13 years); 40% had congenital heart disease (CHD), 7% were re-transplants, 42% were non-white and 43% had Medicaid insurance. Overall, 186 (9%) children had a report of NA at a median age of 15 years with more than two-thirds of NA episodes occurring after 12 years of age. Factors independently associated with NA were: adolescent age at transplant (hazard ratio [HR] 7.0, 95% confidence interval [CI] 4.1 to 12, compared with infants); black race (HR 2.3, 95% CI 1.7 to 3.3, compared with white); Medicaid insurance (HR 2.0, 95% CI 1.5 to 2.7, compared with non-Medicaid insurance); and ventilator or ventricular assist device (VAD) support at transplant. The risk of mortality conditional upon report of NA was 26% at 1 year and 33% at 2 years. CONCLUSIONS: Medication NA is an important problem in pediatric HT recipients and is associated with high mortality. Adolescent age, black race, Medicaid insurance and invasive hemodynamic support at transplant were associated with NA, whereas time on the wait list and gender were not. Targeted interventions among at-risk populations may be warranted.