A family-centered educational program to promote independence in pediatric heart transplant recipients.

CONTEXT: Characteristic adolescent risk-taking behavior, including nonadherence with prescribed medications, can be life-threatening for transplant recipients. Suggestions for managing nonadherence in teen recipients include providing them and their parents with adequate information about medications, talking with and listening to pediatric recipients about problems with the comprehensive regimen, and encouraging age-appropriate responsibility for maintaining health. OBJECTIVE: The clinical goal of this project was to develop a structured age-appropriate educational program to prepare pediatric transplant recipients and their families for the patient's life as a responsible, independent individual. Our primary research goal was to assess patients' and parents' knowledge about critical aspects of heart transplantation and the treatment regimen with brief questionnaires before and after they received the educational materials from their primary nurse coordinator. DESIGN, SETTING, PARTICIPANTS: This descriptive pre-post test study was done to assess the effectiveness of an innovative family-centered educational program among 20 pediatric heart transplant recipients and their parents at Children's Hospital of Pittsburgh, University of Pittsburgh Medical Center. MAIN OUTCOME MEASURE, RESULTS: Percentage change in children's scores on questionnaires given before and after the educational intervention ranged from -8% to 300% (mean, 64.1%). Percentage change in scores from before to after for parents ranged from -19% to 53.8% (mean, 7.2%).

Survival in allosensitized children after listing for cardiac transplantation.

BACKGROUND: Little is known about the effect of pre-transplant alloantibody in the pediatric cardiac transplant population. METHODS: All cardiac listings (n = 298) at Children's Hospital of Pittsburgh from January 1990 through February 2006 were reviewed to determine the impact of allosensitization on transplantation outcomes. Analysis focused on: (1) wait list outcomes; (2) survival from the time of listing, regardless of subsequent transplantation; (3) post-transplant graft and patient survival; and (4) post-transplant freedom from graft vasculopathy. Institutional policy required a negative, prospective crossmatch for candidates with panel-reactive antibody >20%. RESULTS: Alloantibody data were available for 252 (85%) listings. Median time to transplantation was greater for sensitized vs non-sensitized subjects (2.7 months vs 1.3 months; p = 0.02). At 1 year after listing, sensitized subjects had a higher incidence of death (22% vs 8.4%; p = 0.055). Survival at all time-points after listing (regardless of transplantation) was worse for sensitized subjects (p = 0.04). Although no statistically significant differences in post-transplant graft or patient survival were noted, pre-transplant allosensitization was associated with decreased freedom from graft vasculopathy (hazard ratio [HR] 2.76, 95% confidence interval [CI] 1.18 to 6.45; p = 0.019). CONCLUSIONS: A policy requiring a negative, prospective crossmatch for highly sensitized candidates is associated with longer wait list time and higher mortality after listing. The development of graft vasculopathy appears to be influenced by the presence of pre-transplant alloantibody.

Cardiopulmonary outcome of neonatal extracorporeal membrane oxygenation at ages 10-15 years.

OBJECTIVE: The purpose of this study was to evaluate the long-term cardiopulmonary outcome at ages 10-15 yrs following neonatal extracorporeal membrane oxygenation (ECMO). The specific aims of the study were to assess baseline aerobic capacity, cardiac function, and pulmonary function in neonatal ECMO survivors using graded exercise testing, echocardiography, and pulmonary function tests. DESIGN: Cohort study. SETTING: Exercise and pulmonary function laboratories of a large children's hospital. PATIENTS: Seventeen 10- to 15-yr-old children treated with ECMO as neonates for meconium aspiration syndrome and 17 age-matched healthy controls. INTERVENTIONS: Children were evaluated by use of physical exam, electrocardiogram, echocardiogram, treadmill stress test, and pulmonary function tests. MEASUREMENTS AND MAIN RESULTS: Average weight, height, and age were similar between the groups. Both pre- and postexercise pulmonary function tests revealed air trapping and mild lower airway obstruction in the ECMO group, compared with mean pulmonary functions in the normal range for the control group. The mean forced expiratory volume in 1 sec, the forced expiratory flow between 25% and 75% of vital capacity, and the ratio between residual volume and total lung capacity were significantly different between the ECMO group and the control group. Although the ECMO group exhibited baseline and postexercise lung function abnormalities, there were no differences in maximal oxygen consumption between the two groups and all subjects reached anaerobic threshold. By regression analysis, the gestational age, duration of oxygen, and exercise score were significantly correlated with baseline lung function, using forced expiratory flow between 25% and 75% of vital capacity as the dependent variable. CONCLUSIONS: Despite abnormalities in baseline and postexercise pulmonary functions, ECMO graduates have similar aerobic capacity to age-matched healthy controls. The most significant factor in predicting long-term pulmonary outcome in ECMO graduates is the duration of oxygen use following decannulation.

Impact of telemedicine on the practice of pediatric cardiology in community hospitals.

BACKGROUND: Tele-echocardiography has the potential to bring real-time diagnoses to neonatal facilities without in-house pediatric cardiologists. Many neonates in rural areas, smaller cities, and community hospitals do not have immediate access to pediatric sonographers or echocardiogram interpretation by pediatric cardiologists. This can result in suboptimal echocardiogram quality, delay in initiation of medical intervention, unnecessary patient transport, and increased medical expenditures. Telemedicine has been used with increased frequency to improve efficiency of pediatric cardiology care in hospitals that are not served by pediatric cardiologists. Initial reports suggest that telecardiology is accurate, improves patient care, is cost-effective, enhances echocardiogram quality, and prevents unnecessary transports of neonates in locations that are not served by pediatric cardiologists. OBJECTIVE: We report the largest series to evaluate the impact of telemedicine on delivery of pediatric cardiac care in community hospitals. We hypothesized that live telemedicine guidance and interpretation of neonatal echocardiograms from community hospitals is accurate, improves patient care, enhances sonographer proficiency, allows for more efficient physician time management, increases patient referrals, and does not result in increased utilization of echocardiography. METHODS: Using desktop videoconferencing computers, pediatric cardiologists guided and interpreted pediatric echocardiograms from 2 community hospital nurseries 15 miles from a tertiary care center. Studies were transmitted in real-time using the H.320 videoconferencing protocol over 3 integrated services digital network lines (384 kilobits per second). This resulted in a frame rate of 23 to 30 frames per second. Sonographers who primarily scanned adult patients but had received additional training in echocardiography of infants performed the echocardiograms. Additional views were suggested as deemed necessary by the interpreting physician, and interpretations were made during the videoconference. The results of the echocardiogram and recommendations for patient care were communicated to the referring physician over the telemedicine system. Analyses of accuracy, patient treatment, echocardiogram quality, time to diagnosis, pediatric cardiologist practice time management, patient referral patterns, and echocardiography utilization were conducted prospectively. RESULTS: A total of 500 studies in 364 patients were transmitted during a 30-month period. The most common indication for echocardiography was to rule out congenital heart disease (208 of 500 studies). Signs and symptoms that prompted this concern included cyanosis, murmur, tachypnea, genetic syndrome, arrhythmia, abnormal fetal echocardiogram, and maternal diabetes. Other indications included suspected patent ductus arteriosus (PDA; 182 of 500 studies), intracardiac clot or catheter position, persistent pulmonary hypertension, and hemodynamic instability. Cardiac diagnoses included complex congenital heart disease (n = 16), noncritical heart disease (n = 107), and PDA (n = 86). Additional diagnoses included persistent pulmonary hypertension (n = 12), septal hypertrophy (n = 18), right atrial mass/clot/vegetation (n = 11), and decreased cardiac function (n = 6). An umbilical venous catheter was visualized in the left atrium in 9% (45 of 500) of all studies. No significant abnormalities were found in 244 studies. Major diagnoses were confirmed by subsequent review of videotape in all studies. Comparison of final videotape interpretation to initial telemedicine diagnosis resulted in 1 minor diagnostic change (membranous versus inlet ventricular septal defect). Echocardiograms were performed in subsequent visits in 264 patients. The diagnosis was altered in 3 patients. Telemedicine had an immediate impact on patient care in 151 transmissions. The most common interventions were indomethacin treatment for PDA (n = 76), retraction of umbilical venous catheters from the left atrium (n = 45), inotropic or anticongestive therapy (n = 19), anticoagulation (n = 8), and prostaglandin infusion (n = 8). Nineteen patients were transported to our hospital because of the telemedicine diagnosis. Inpatient or outpatient cardiology follow-up was recommended in an additional 131 studies and did not result in any change in the initial management. The most common diagnoses in these patients were ventricular septal defect (n = 56), atrial septal defect (n = 21), septal hypertrophy (n = 9), intracardiac thrombosis (n = 8), and pulmonary valve stenosis (n = 4). We speculate that the immediate availability of an echocardiographic diagnosis likely prevented unnecessary transport in 14 cases. Recommendations for additional views or adjustment of echocardiography machine settings were made in 95% of transmissions. Real-time guidance was especially helpful in suprasternal notch and subcostal sagittal imaging. Depth, color Doppler sector size, and color Doppler scale were frequently adjusted from routine adult settings during the teleconference. The average time from request for echocardiogram to completion of the videoconference was 28 +/- 14 minutes. This was significantly shorter than the waiting time (12 +/- 16 hours) for the videotape to be delivered by courier. Telemedicine eliminated the need for consultation in 194 cases and allowed the cardiologist to delay the visit until the end of the day in an additional 26 cases. This resulted in average time savings of 4.2 person-hours/wk based on travel and consultation time. Utilization of echocardiography was similar before (35 of 1000 births) and after (33 of 1000 to 43 of 1000) telemedicine installation. The percentage of neonatal echocardiograms that were interpreted by our practice increased from 63% to 81% at 1 hospital and from 0% to 100% at the other hospital. CONCLUSION: Real-time transmission of neonatal echocardiograms from community hospitals over 3 integrated services digital network lines is accurate and has the potential to improve patient care, enhance echocardiogram quality, aid sonographer education, and have a positive impact on referral patterns and time management without increasing the utilization of echocardiography.