Care Of Pediatric Transplant Patients Research Articles

Improving the Care for Pediatric Transplant Patients through Integration of Patient-Reported Outcome Measures into Clinical Practice

Subjective evaluation of medical care and treatment from the patient's perspective is increasingly important. Patient-reported outcome measures (PROMs) are "any report of the patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else" and can comprise information about symptoms, functional status, and quality of life. PROMs have the ability to engage patients meaningfully, give them a voice in their healthcare, and capture their experiences and attitudes. This study explores the perspectives of pediatric solid organ transplant patients, caregivers and healthcare providers on implementing PROMs into clinical practice. Semi-structured interviews were conducted at five Canadian pediatric transplant centres. Maximum variation sampling was used to provide concurring and confirming data, and ensure saturation. An iterative coding process was applied with constant comparative data analysis to identify themes. A total of 20 patients, 22 caregivers and 20 healthcare providers participated. Nearly all participants (n = 59, 95%) were supportive of implementing PROMs with the primary goals to 1) enhance patient-provider communication - "Opens conversations"; "[Patients] state what they're feeling", and 2) increase patient engagement - "Like you're part of the team". Participants discussed the potential impact of PROMs as the provision of preventative - "You'll be proactive", and holistic care - "You cannot separate medical from other aspects. [Patients] are struggling from a mental health perspective". Participants identified selected PROMs, the PedsQLTM Generic Core Scales - "Covers aspects I wouldn't usually include in my assessment" and the PedsQLTM Transplant Module - "More related to transplant patients". Recommendations included 1) PROM data collection for patients eight years of age and older, 2) remote administration and completion of electronic PROMs, prior to clinical appointments, and 3) visual data representation. Findings highlight support for the implementation of PROMs into pediatric solid organ transplantation. Future research is needed to develop implementation strategies to effectively integrate PROMs into clinical workflow and assess the impact on patient health outcomes.

OPTICAL COHERENCE TOMOGRAPHY IN CHILDREN: DEVELOPMENT OF A PROTOCOL FOR THE STANDARDIZED QUANTITATIVE ANALYSIS OF CORONARY ARTERIES

Optical coherence tomography (OCT) is a high-resolution intravascular imaging technique that has shown promise for the early detection of intimal thickening of coronary arteries in pediatric heart transplant recipients. The potential utility of OCT as a diagnostic and/or prognostic tool is currently unclear due to a lack of a standardized approach to analyse OCT images in this population. We established the OCT Core Imaging Laboratory at BC Children’s Hospital to develop a standardized protocol for the quantitative analysis of OCT images. Our study population included n=30 pediatric cardiac transplant recipients who had OCT imaging of the coronary arteries performed as part of standard of care at BC Children’s Hospital (St Jude Medical, now Abbott). We deemed a ‘pullback’ analyzable if ≥10mm of the segment was of good image quality (defined as ≥75% of cross-section visible without artifact). We evenly selected 10-20 cross-sectional frames ≥1 mm apart, avoiding bifurcations. Using the device-manufacturer’s software, we applied digital planimetry to trace the lumen-intima border, the internal elastic lamina, and the external elastic lamina for each cross-sectional frame. Cross-sectional areas (CSA, mm2) were derived for the lumen, the intima and the media; maximal intimal thickness (mm) was defined as the widest point between the circular markers for the intima and media. We calculated the intima/media (I/M) CSA ratio. For each pullback, we derived summary values from cross-sectional frames for relevant variables as means, medians, 95th percentile (p95) and maximal values. We performed inter-rater and intra-rater reliability analyses by intra-class correlation coefficients and Bland-Atman Analyses. Overall, 82% of analyzable pullbacks met inclusion criteria for our protocol (≥10-20 frames, ≥1 mm apart), resulting in 67 pullbacks from 28 patients analysed. The right coronary artery was most frequently imaged (58%), and more often met inclusion criteria for quantitative analyses (85% vs. 82% overall). Mean vs. median and max vs. p95 summary statistics yielded very similar values for I/M CSA and maximal intimal thickness (all ICC>0.98; difference < 3%), suggesting our protocol provides robust summary values. We registered excellent inter-rater and intra-rater reliability for I/M CSA and maximal intimal thickness (all ICC>0.95; difference < 5%). We provide a systematically developed and rigorously tested protocol for the quantitative analysis of OCT images in children. The novel application of OCT to a pediatric population requires expert image analysis and has the potential to improve the care of pediatric transplant patients who are at risk of structural coronary changes.

Outcome of shared care for pediatric cardiac transplantation between two nations with different health care systems

No data are available for the outcome of children undergoing cardiac transplantation with shared care programs in different countries. We sought to investigate the outcome of a shared care transplant program between 2 countries given the complex immunologic, cardiac, and psychologic needs of these young people. We investigated the results of a shared care program for children who underwent cardiac transplantation between our center in the Republic of Ireland and 2 centers in the United Kingdom over 2 decades. Between 1990 and 2013, 22 patients underwent 23 cardiac transplants. The median age at transplant was 3.2 years (range, 0.3-13.3 years), median age at listing was 30 months (range, 0.1-13.3 years), and the median waiting list time was 2.8 months (range, 0.3-14 months). The median time to return to the referral center from the time of transplant was 3 weeks (range, 2-8 weeks). The referral center treated 4 of 5 late rejection episodes. Angiography was undertaken in the transplant center at annual or biannual review. Outcomes for rejection, coronary vasculopathy, and survival were comparable between the referral and transplant centers. This report of shared care for pediatric transplant patients between 2 sovereign nations demonstrates good results, with comparable outcomes to the specialist transplant center. These data may encourage liberalization of follow-up in other centers.

Primer on Renal Transplantation

Renal transplantation transforms chronically ill children with end stage renal disease (ESRD) into near normal resulting in improvement in nutrition, growth, neurodevelopment and quality of life, and is the goal of therapy. However, the benefits of transplantation come at a price of life-long treatment with immunosuppressive medications, increased risk of infections and malignancy. Children younger than 10 y of age have the best, and adolescents have the worst 5-y graft survival likely due to non-adherence with medications in the adolescents. Long-term complications include ongoing issues related to chronic kidney disease (CKD) and cardiovascular morbidity and mortality contributing to graft loss and shortened life expectancy, thus limiting the success of organ transplantation. Therefore, appropriate management of CKD and cardiovascular issues should be integral to the care of pediatric transplant patients. The other ongoing challenges include organ shortage, prevention and treatment of late acute rejections and chronic graft dysfunction, discovering reliable noninvasive immune monitoring tools, improving adherence, psychosocial rehabilitation, and the elusive goal of tolerance.

Challenges in pediatric transplantation: The impact of chronic kidney disease and cardiovascular risk factors on long‐term outcomes and recommended management strategies

Barriers to successful outcomes following pediatric transplantation have shifted from ischemic reperfusion injury and rejection to more long-term complications. Of particular concern is the high prevalence of CKD owing to preexisting damage and nephrotoxicity, as well as other CV complications such as hypertension and cardiomyopathy. All of these contribute to graft loss and shortened life expectancy, thereby limiting the success story of solid-organ transplantation. Managing CKD and related CV morbidity should be integral to the care of pediatric transplant patients, and timely detection of any irregularities would increase the chances of restoring lost kidney function. GFR is still the widely accepted indicator of renal function, and nuclear medicine techniques are the gold standard measurement methods. These methods are limited by costs, radiation exposure and substrate injection, and current practice still uses the Schwartz estimate, despite its well-documented limitations. Newer endogenous markers of GFR, such as cystatin C clearance, give a more accurate measure of true GFR but have not been embraced in the management of pediatric transplant recipients. Furthermore, indirect markers (e.g., microalbuminuria and hypertension) could also aid early detection of renal damage. The effects of mainstay immunosuppressants on kidney and heart function are varied, with available data indicating favorable outcomes with tacrolimus compared with ciclosporin. There is a need for appropriately designed and powered randomized controlled trials to validate innovative concepts for tailored immunosuppression in the pediatric population. To date, very few studies have generated long-term data in pediatric renal transplant patients - results of 1-4-yr study favored tacrolimus over ciclosporin, but other immunosuppressive agents also need to be evaluated.