Pediatric solid organ transplant recipients: transition to home and chronic illness care.

Pediatric SOT recipients are medically fragile and present with complex care issues requiring high-level management at home. Parents of hospitalized children have reported inadequate preparation for discharge, resulting in problems transitioning from hospital to home and independently self-managing their child's complex care needs. The aim of this study was to investigate factors associated with the transition from hospital to home and chronic illness care for parents of heart, kidney, liver, lung, or multivisceral recipients. Fifty-one parents from five pediatric transplant centers completed questionnaires on the day of hospital discharge and telephone interviews at three wk, three months, and six months following discharge from the hospital. Care coordination (p = 0.02) and quality of discharge teaching (p < 0.01) was significantly associated with parent readiness for discharge. Readiness for hospital discharge was subsequently significantly associated with post-discharge coping difficulty (p = 0.02) at three wk, adherence with medication administration (p = 0.03) at three months, and post-discharge coping difficulty (p = 0.04) and family management (p = 0.02) at six months post-discharge. The results underscore the important aspect of education and care coordination in preparing patients and families to successfully self-manage after hospital discharge. Assessing parental readiness for hospital discharge is another critical component for identifying risk of difficulties in managing post-discharge care.

Transition from hospital to home following pediatric solid organ transplant: qualitative findings of parent experience.

Transplant providers are challenged to determine appropriate interventions for patients and families due to limited published research regarding the context of the post-discharge experience from the perspective of parents of transplanted children. The purpose of this study is to describe the parent perspective of the transition from hospital to home following their child's solid organ transplant. Within a mixed-methods design, 37 parents of pediatric heart, kidney, and liver transplant recipients from three pediatric hospitals responded to qualitative interview questions on the day of hospital discharge and three wk following hospital discharge. Insight to the discharge preparation process revealed necessary education components. Post-discharge themes were identified for coping, knowledge, and adherence. The parents' responses provide awareness as to specific stressors and concerns parents are faced with when their child is discharged from the hospital after solid organ transplant and opportunities for ways the transplant team can provide support.

The influence of human leukocyte antigen matching on outcomes in pediatric heart transplantation.

Previous adult heart transplantation studies have demonstrated that donor-recipient human leukocyte antigen (HLA) matching results in reduced graft failure and improved patient survival. No study has examined these effects in children. This study investigated the effect of HLA matching on outcomes in pediatric heart transplantation. All pediatric heart transplantation data for patients 0-18 years of age available from the United Network for Organ Sharing Transplant Registry from 1987 to 2009 were analyzed retrospectively. Donor-recipient HLA matching at loci A, B, and DR (0-6) was compared with graft survival and recipient survival. For this study, 3,751 pediatric cardiac transplantation events with complete HLA matching data were identified and grouped as having 0 to 2 matches (3,416 events) or 3 to 6 matches (335 events). The 3- to 6-match group had less graft failure than the 0- to 2-match group (28.7% vs 34.4%; p = 0.035) and greater patient survival by 5 years (81% vs 72%; p = 0.045) and 10 years (66% vs 55%; p = 0.005) after transplantation. The HLA-DR matching alone resulted in less graft failure (p = 0.038) and improved patient survival (p = 0.017). A higher degree of HLA matching in pediatric heart transplantation is associated with decreased graft failure and improved patient survival. In this study, decreased graft failure rates and superior survival also were seen with DR matching alone.

MRI validated echocardiographic technique to measure total cardiac volume: a tool for donor-recipient size matching in pediatric heart transplantation.

Our aim is to develop and validate an accurate method for estimating TCV using standard echocardiographic imaging that can be easily employed to aid in donor-recipient size matching in pediatric heart transplantation. Thirty patients who underwent Echo and cardiac magnetic resonance imaging (cMRI) were identified. TCV was measured on cMRI. TCV was determined echocardiographically by two methods: a volume measurement using the modified Simpson's method on a four-chamber view of the heart; and a calculated volume measurement which assumed a true-elliptical shape of the heart. These two methods where compared with the value obtained by cMRI using the concordance correlation coefficient (CCC). TCV by method 1 correlated well with cMRI (CCC = 0.98%, CI = 0.97, 0.99). TCV by method 2 had a CCC = 0.90 (CI = 0.9464, 0.9716) when compared to cMRI. Left ventricular end-diastolic volume (LVEDV) also correlated as a predictor of TCV in patients with structurally normal hearts and could be described by the equation: TCV = 6.6 (LVEDV) + 12 (R(2)  = 0.97). Echocardiographic assessment of TCV for recipients and their potential donors is a simple process and can be prospectively applied as part of donor evaluation.

Dual-axis rotational coronary angiography: a new technique for detecting graft coronary vasculopathy in pediatric heart transplant recipients.

Annual surveillance coronary angiograpyhy to screen for graft coronary vasculopathy is routine practice after orthotopic heart transplantation. Traditionally, this is performed with direct coronary angiography using static single-plane or biplane angiography. Recently, technological advances have made it possible to perform dual-axis rotational coronary angiography (RA). This technique differs from standard static single-plane or biplane angiography in that a single detector is preprogrammed to swing through a complex 80° arc during a single injection. It has the advantage of providing a perspective of the vessels from a full arc of images rather than from one or two static images per contrast injection. The current study evaluated two coronary angiography techniques used consecutively at a single center to evaluate pediatric heart transplant recipients for graft coronary vasculopathy. A total of 23 patients underwent routine coronary angiography using both biplane static coronary angiography (BiP) and RA techniques at the Children's Hospital of Wisconsin from February 2009 to September 2010. Demographic and procedure data were collected from each procedure and analyzed for significance utilizing a Wilcoxon rank sum test. No significant demographic or procedural differences between the BiP and the RA procedures were noted. Specific measures of radiation dose including fluoroscopy time and dose area product were similar among the imaging techniques. The findings show that RA can be performed safely and reproducibly in pediatric heart transplant recipients. Compared with standard BiP, RA does not increase radiation exposure or contrast use and in our experience has provided superior angiographic imaging for the evaluation of graft coronary vasculopathy.

Organizational structure and processes in pediatric heart transplantation: a survey of practices.

Despite emerging literature on pediatric heart transplantation, there continues to be variation in current practices. The degree of variability among heart transplant programs has not been previously characterized. The purpose of this study was to evaluate organizational structure and practices of pediatric heart transplant programs. The UNOS database was queried to identify institutions according to volume. Coordinators from 50 institutions were invited to participate with a 70% response rate. Centers were grouped by volume into four categories. Some institutional practices were dominated by clear volume trends. Ninety-five percent of larger centers routinely transplant patients with known antibody sensitization and report a broader range and acuity of recipients. Ninety-four percent report problems with non-adherence. Sixty-nine percent of centers routinely require prospective crossmatches. There was dramatic variation in the use of steroids across all centers. Sixty-five percent of centers transition adolescents to an adult program. Prophylaxis protocols were also highly inconsistent. This survey provided a comprehensive insight into current practices at pediatric heart transplant programs. The results delineated remarkably variable strategies for routine aspects of care. Analysis of divergence along with uniformity across protocols is a valuable exercise and may serve as a stepping-stone toward ongoing cooperation and clarity for evidence-based practice protocols.

Feasibility and Acceptability of a mHealth Self-Management Intervention for Pediatric Transplant Families.

Families of pediatric solid organ transplant recipients need ongoing education and support in the first 30 days following hospital discharge for the transplantation. The purpose of this report is to describe the feasibility, acceptability, and preliminary efficacy of a mHealth family-self management intervention, (myFAMI), designed to improve post-discharge outcomes of coping, family quality of life, self-efficacy, family self-management, and utilization of health care resources. We enrolled 46 primary family members. myFAMI was feasible and acceptable; 81% (n=17/21) of family members completed the app at least 24/30 days (goal 80% completion rate). Family members generated 134 trigger alerts and received a nurse response within the goal timeframe of < 2 h 99% of the time. Although there were no significant differences between groups, primary outcomes were in the expected direction. The intervention was well received and is feasible for future post-discharge interventions for families of children who receive an organ transplant.

Working together as a team: adolescent transplant recipients and nurse practitioners.

Nurse practitioners are a critical part of the transplant team, enhancing the quality of patient care with their knowledge and skill with respect to disease-specific populations of patients. Adolescent transplant recipients are a vulnerable population and require specific considerations. Nurse practitioners can successfully tailor care to the adolescent developmental stages in order to promote quality of life, adherence to the medical regimen, and successful transition to adult transplant centers and to minimize risk-taking behaviors. Teamwork between the patient's family and the entire transplant team is important to optimize not only the patient's health but also to ensure quality of life after transplant. Adolescents can be especially challenging after transplant, given their complex and evolving psychosocial and cognitive development. Nurse practitioners are in a unique position to be central in adolescents' successful adaptation to their medical condition. Facilitating identification and management of medication-related side effects, awareness of emotional health and quality of life, adherence to the medical regimen, and eventual transition to adult caregivers all remain critically important steps in care that are ideally suited for advance practice leadership.

A Descriptive Study of Transplant Coordinator Job Satisfaction.

INTRODUCTION: Substantial growth in the field of transplantation in recent years has increased the need for transplant coordinators. The growing need for these highly skilled clinicians warrants a review of characteristics that increase job satisfaction, an important consideration for transplant centers. RESEARCH QUESTION: The study described transplant coordinators' perceptions of job satisfaction in their current positions. DESIGN: This study evaluated transplant coordinator job satisfaction conducted on 3 separate occasions at US geographically diverse sites. Two instruments, the Vermont Nurses: Job Analysis and Retention Survey and an investigator-designed role and demographic survey, were used to capture study participants' attitudes regarding elements of job satisfaction, design, and involvement. RESULTS: Demographic characteristics of study participants (N = 133) reveal a largely female population (n = 113, 85%) employed full time (n = 124, 93%) in a hospital setting (n = 106, 80%). Scores for items related to job satisfaction, design, and involvement were generally positive. Participants reported being less satisfied for characteristics including promotion opportunities, fringe benefits, and attention to career development provided by employers. CONCLUSION: As annual rates of transplants continue to increase across the United States, the need for growing and retaining talented staff in transplant care settings is even more critical. Results of the study suggest that while transplant coordinators remain largely satisfied with the challenges and personal fulfillment associated with their positions, opportunities for professional development may improve retention and recruitment. Specifically, supporting career development and providing formalized evaluation and supervision were identified as areas of improvement within this specialized group of clinicians.

Outcomes of children with restrictive cardiomyopathy listed for heart transplant: a multi-institutional study.

BACKGROUND: Restrictive cardiomyopathy (RCM) in children often has a progressive nature, with a high risk of clinical deterioration and death. Heart transplantation (HTx) is a widely accepted therapy that offers long-term survival, but criteria for and outcomes after listing have not been well defined. METHODS: A multi-institutional, prospective, event-driven data registry of 3,147 patients aged < 18 years listed for HTx from January 1993 to December 2006 was used to assess risk factors and survival of 145 listed RCM patients. RESULTS: Mean age at listing was 8.1 years, with 44% listed as United Network of Organ Sharing status 1, 33% on inotropic support, 10% on a ventilator, and 5% on mechanical support. At 1 year, 82% of these patients survived to HTx, whereas 9% died waiting. Univariate risk factors for death while waiting included younger age (p < 0.001), ventilator dependence (p < 0.001), status 1 (p < 0.001), and inotrope usage (p < 0.001). Use of multiple support devices at listing (ventilator, extracorporeal membrane oxygenation, ventricular assist device, intraaortic balloon pump) was also an important risk factor for early phase death while waiting (relative risk; 9.01, p < 0.0001). Survival after listing was 63% at 10 years and compared favorably with survival for non-cardiomyopathy patients (p = 0.01). CONCLUSIONS: Children with RCM awaiting HTx have a generally low waitlist mortality and reasonable overall survival. Children requiring mechanical support and infants had a significantly higher risk of death while waiting. Further study is warranted to identify factors important in determining the optimal timing of listing in children with RCM before the need for inotropic or mechanical support.

Practical application of the virtual crossmatch.

BACKGROUND: HLA antibody sensitization is a risk factor for morbidity and mortality following heart transplantation. We previously reported the results of our in vitro study demonstrating the predictive value of the Virtual Crossmatch (VXM) and have since applied it clinically for sensitized children listed for heart transplant at our center. The VXM utilizes the results of specific antibody screening via flow cytometry to predict acute incompatibility. This review examines the effect of the VXM on wait times and outcomes. METHODS: The study population included all patients listed for heart transplantation at Children's Hospital of Wisconsin. Antibody sensitization was defined as PRA>10% and/or by the identification of HLA specific antibody using AHG-CDC or flow cytometry. Categorical data was analyzed via Fisher's exact test while continuous variables were compared via an unpaired t test. RESULTS: There were a total of 111 listed patients between 7/91-9/06. The sensitization rate was 23% (25/111). 19 patients who went on to transplant, deterioration or death were divided into 3 groups depending on listing strategy; Group 1 were listed with a prospective crossmatch requirement, Group 2 with a VXM, and Group 3 with a retrospective cross match. 7/8 patients in group 1 died prior to transplant with median wait time of 119 days. 9/10 patients in group 2 were transplanted with 100% survival and median wait time of 65 days, Group 3 included 1 patient who received a graft after 54 days and died 3 months post transplant with humoral rejection. The VXM was highly concordant with the retrospective crossmatch. CONCLUSIONS: Use of a VXM can lead to shorter wait times and better outcomes as a listing strategy for sensitized children requiring cardiac transplantation. The VXM allows transplant physicians to risk stratify patients and consider an anticipated positive crossmatch as one additional factor in the risk-benefit analysis inherent to any donor offer. This experience supports use of the VXM as an alternative to prospective crossmatch requirements. One should recognize that other era dependent improvements such as updated criteria for patient and donor selection along with newer therapies and bridging options may have contributed to superior outcomes seen in the more recent cohort of patients treated with the VXM approach.