RESUMEN
For smaller pediatric patients on ventricular assist devices (VADs), the Berlin Heart EXCOR® remains the main form of durable support. It requires a connection to the external IKUS which has limited portability and battery life. The new EXCOR® Active mobile driving unit has battery life up to 13 hours. We describe the first North American experience with the EXCOR® Active in pediatric patients with a Berlin Heart device. Retrospective chart review was undertaken. Between Oct/2022 to Mar/2024, seven patients were on a Berlin Heart and supported with the EXCOR® Active. All patients were initially supported with the IKUS with a median time to transition to the EXCOR® Active of 12.0 days (IQR 9.5, 18.5) and a median time of support with the EXCOR® Active of 65.0 days (IQR, 32.0, 81.0). The EXCOR® Active posed no significant safety issues and minimal operating issues were noted. Following transition from IKUS to the EXCOR® Active there was increased patient and caregiver mobility throughout the hospital. Use of the EXCOR® Active has the potential to improve quality of life in pediatric patients waiting for heart transplantation.
RESUMEN
BACKGROUND: Ventricular assist devices (VADs) are used to bridge pediatric patients to heart transplantation. Paracorporeal VADs require the placement of cannulas, which can create an environment for infections. We examined cannula infections in pediatric VAD patients and the role of nutritional status. METHODS: This retrospective study (2005-2021) included patients <20 years old on VAD support using Berlin Heart EXCOR® cannulas. Cannula infections were defined by a positive culture and need for antibiotic therapy. Malnutrition was defined using the American Society of Parenteral and Enteral Nutrition guidelines as well as the Michigan MTool. RESULTS: There were 76 patients with a median age at implant of 0.9 years (IQR 0.4, 3.6), 50% male, with 73.7% having non-congenital heart disease. More than one-quarter (26.3%) of patients developed a cannula infection. Higher pre-implant weight (OR = 1.93, p = 0.05), creatinine (OR = 1.02, p = 0.044), and pre-albumin (OR = 15.79, p = 0.025), as well as duration of VAD support (OR = 1.01; p = 0.003) were associated with increased odds of developing a cannula infection. There was no difference in the malnutrition parameters between those with and without an infection. CONCLUSIONS: Further exploration in a larger cohort is needed to see whether these associations remain and if the incorporation of objective measures of nutritional status at the time of infection are predictive.
RESUMEN
BACKGROUND: Hypertrophic cardiomyopathy is a burdensome condition that inflicts both physical and psychological impairment on those with the disease, negatively impacting health-related quality of life (HRQoL). Given the abundance of evidence suggesting a role of physical activity (PA) in modulating HRQoL in healthy populations of children, we sought to determine the relationship between HRQoL and PA in children diagnosed with hypertrophic cardiomyopathy. METHODS AND RESULTS: A multicenter prospective observational cohort study was conducted, with patients with hypertrophic cardiomyopathy aged 10 to 19 years being provided a wrist-worn activity tracker (Fitbit Charge HR) to wear for 14 days. Patients self-reported on Pediatric Quality of Life 4.0 quality of life inventory items, which were associated with PA metrics following covariate adjustment using linear regression. A total of 56 participants were recruited to the study. The median age at enrollment was 15.5 years (interquartile range, 13.8-16.8), and 16 out of 56 (29%) of the cohort were girls. The cohort reported decreased metrics of physical, psychosocial, and total summary scores compared with health reference populations, with scores comparable with that of published populations with chronic disease. Increased physical HRQoL scores were significantly associated with increased daily steps taken, distance traveled, and flights of stairs climbed. CONCLUSIONS: These results show that impaired PA correlates with reduced HRQoL in children with hypertrophic cardiomyopathy, suggesting PA may partially mediate HRQoL in this population.
Asunto(s)
Cardiomiopatía Hipertrófica , Ejercicio Físico , Calidad de Vida , Humanos , Femenino , Adolescente , Cardiomiopatía Hipertrófica/fisiopatología , Cardiomiopatía Hipertrófica/psicología , Masculino , Estudios Prospectivos , Niño , Adulto Joven , Monitores de Ejercicio , Estado de SaludRESUMEN
BACKGROUND: Short-term continuous flow (STCF) ventricular assist devices (VADs) are utilized in adults with cardiogenic shock; however, mortality remains high. Previous studies have found that high pre-operative MELD-XI scores in durable VAD patients are associated with mortality. The use of the MELD-XI score to predict outcomes in STCF-VAD patients has not been explored. We sought to determine the relationship between MELD-XI and outcomes in adults with STCF-VADs. METHODS: This was a retrospective review of adults implanted with STCF-VADs between 2009 and 2019. Receiver operating characteristic (ROC) analysis was performed to predict outcomes and Kaplan-Meier analysis was done to assess survival. RESULTS: Seventy-nine patients were included with a median MELD-XI score of 21.2 (IQR 13.5, 27.0). Patients with an unsuccessful wean from support (p < 0.001) or major post-operative bleeding (p = 0.03) had significantly higher pre-implant MELD-XI scores. The optimal MELD-XI cut-point for mortality was 24.9 with 27.8 for major bleeding. Survival was worse among patients in the high-risk MELD-XI group, however, not statistically significant (p = 0.09). Prior ECMO support, but not MELD-XI, was an independent predictor of unsuccessful wean (p = 0.03). CONCLUSIONS: Pre-operative MELD-XI score was a moderate predictor of unsuccessful wean with limited utility in predicting bleeding in patients on STCF-VAD support. This scoring system may be useful in the clinical setting for pre-implant risk stratification and counseling among patients and outcomes.
Asunto(s)
Enfermedad Hepática en Estado Terminal , Insuficiencia Cardíaca , Trasplante de Corazón , Corazón Auxiliar , Adulto , Humanos , Corazón Auxiliar/efectos adversos , Hígado , Estudios Retrospectivos , Estimación de Kaplan-Meier , Pronóstico , Enfermedad Hepática en Estado Terminal/complicaciones , Índice de Severidad de la Enfermedad , Insuficiencia Cardíaca/cirugía , Insuficiencia Cardíaca/complicacionesRESUMEN
BACKGROUND: Pediatric patients awaiting a heart transplant have high waitlist mortality. Several strategies have been utilized to decrease waiting times, but a mortality risk still exists. New medical technologies may improve waiting times and associated mortality. Ex situ heart perfusion (ESHP) is one such technology, which can decrease the impact of cold ischemia on the donor heart and allow for a longer out-of-body time. Adoption of such technology in pediatric heart transplantation will require support from end users, including patient and families. The aim of this qualitative study was to report the perspectives of families with experience related to pediatric HTx toward ESHP. METHODS: Semistructured interviews were conducted with 12 parents or guardians of children who were awaiting or received heart transplantation. Interviews were transcribed, and data were analyzed using qualitative content analysis. RESULTS: Participants expressed varied awareness and knowledge of ESHP. Independent of their understanding of ESHP, all purported that ESHP was an excellent idea and that this technology should be implemented in the pediatric population. They did not identify fundamentally different ethical issues or concerns for ESHP being used relative to other medical technologies. Overall, most participants described consent processes for ESHP should be like any other procedure. All agreed that the surgeon should continue to describe the overall health of the donor heart, provide their medical recommendations, and allow families to have the final say. CONCLUSIONS: The concepts described by the parents and guardians are important in moving this novel technology forward. This information will serve the basis for knowledge translation that will provide educational resources to broaden the understanding and reach of ESHP.
RESUMEN
Ex situ heart perfusion (ESHP) has increased the pool of donors in adults. However, this is not true in pediatrics due to lack of devices. Therefore, we sought to understand organ refusal in pediatrics and estimate donor heart usage with ESHP. Donor hearts offered to pediatrics were identified from the Organ Procurement and Transplantation Network Database (2000-2019). A linear regression model was built to predict average travel speed, and the extended maximum permitted distance with ESHP was calculated. This extended distance was compared with the policy for maximum travel distance. There were 33,708 donor offers (n = 10,807 hearts) to pediatric programs [24.1% (n = 2,604) transplanted]. Six percent of the offers (n = 1,832) (n = 771 hearts) were turned down due to distance, with 676 of the hearts never transplanted. Based on the modeling and using an ESHP time of 5.5 hours, 84% (n = 570/676) of hearts turned down due to distance could be utilized by pediatric programs. This proportion increased to 100% with 10 hours of support time. By addressing prolonged ischemic time due to distance, ESHP has the potential to increase the number of donors utilized in pediatric candidates. Although no device exists for pediatrics, this analysis lends support to the importance of developing this technology.
Asunto(s)
Trasplante de Corazón , Obtención de Tejidos y Órganos , Adulto , Humanos , Niño , Donantes de Tejidos , Corazón , PerfusiónRESUMEN
BACKGROUND: Ventricular assist devices (VADs) have improved survival to heart transplantation (HTx). However, VADs have been associated with development of antibodies against human leukocyte antigen (HLA-Ab) which may limit the donor pool and decrease survival post-HTx. Since HLA-Ab development after VAD insertion is poorly understood, the purpose of this prospective single-center study was to quantify the incidence of and evaluate risk factors for HLA-Ab development across the age spectrum following VAD implantation. METHODS: Adult and pediatric patients undergoing VAD placement as bridge to transplant or transplant candidacy between 5/2016 and 7/2020 were enrolled. HLA-Ab were assessed pre-VAD and at 1-, 3-, and 12-months post-implant. Factors associated with HLA-Ab development post-VAD implant were explored using univariate and multivariate logistic regression. RESULTS: 15/41 (37%) adults and 7/17 (41%) children developed new HLA-Ab post-VAD. The majority of patients (19/22) developed HLA-Ab within two months of implant. New class I HLA-Ab were more common (87% adult, 86% pediatric). Prior pregnancy was strongly associated with HLA-Ab development in adults post-VAD (HR 16.7, 95% CI 1.8-158, p = 0.01). Of the patients who developed new HLA-Ab post-VAD, in 45% (10/22) the HLA-Ab resolved while in 55% (12/22) the HLA-Ab persisted. CONCLUSION: More than one-third of adult and pediatric VAD patients developed new HLA-Ab early after VAD implant with the majority having class I antibodies. Prior pregnancy was strongly associated with post-VAD HLA-Ab development. Further studies are needed to predict regression or persistence of HLA-Ab developed post-VAD, to understand modulation of individuals' immune responses to sensitizing events, and to determine whether transiently detected HLA-Ab post-VAD recur and have long-term clinical impact post-heart transplantation.
RESUMEN
BACKGROUND: Children with heart failure have the highest mortality while awaiting transplantation. Ex situ heart perfusion (ESHP), a method for continuous perfusion of the donor heart, has the potential to improve access to transplant by increasing travel distance between donor and recipient. An adult ESHP device is currently available, but as of yet there is no pediatric device. The aim of this study was to evaluate current knowledge of ESHP among pediatric heart transplant practitioners, define potential barriers, and identify uses of this novel technology. METHODS: An electronic survey was developed to assess perspectives of international pediatric heart transplant stakeholders (n = 68) on ESHP. Select questions were analyzed to evaluate for associations between groups of respondents and patterns of response. RESULTS: Most respondents were familiar but <10% had clinically utilized ESHP. There was optimism that ESHP could decrease waitlist mortality. Respondents were concerned about potential device malfunction and lack of long-term outcomes. There were no differences found in terms of ESHP familiarity among age groups, practitioner center volume, country of work, or discipline. CONCLUSIONS: ESHP has the potential to expand the pediatric heart donor pool and decrease waitlist mortality. More education on outcomes and risks/benefits is needed in order to promote widespread adoption.
Asunto(s)
Insuficiencia Cardíaca , Trasplante de Corazón , Niño , Adulto , Humanos , Trasplante de Corazón/métodos , Donantes de Tejidos , Corazón , Insuficiencia Cardíaca/cirugía , Perfusión/métodosRESUMEN
Ex situ heart perfusion (ESHP) has increased the pool of donors in adults. However, this is not true in pediatrics due to lack of devices. Therefore, we sought to understand organ refusal in pediatrics and estimate donor heart usage with ESHP. Donor hearts offered to pediatrics were identified from the United Network for Organ Sharing (UNOS) Database (2000-2019). A linear regression model was built to predict average travel speed, and the extended maximum permitted distance with ESHP was calculated. This extended distance was compared with the policy for maximum travel distance. There were 33,708 donor offers (n = 10,807 hearts) to pediatric programs (24.1% [n = 2,604] transplanted). Six percent of the offers (n = 1,832) (n = 771 hearts) were turned down due to distance, with 676 of the hearts never transplanted. Based on the modeling and using an ESHP time of 5.5 hours, 84% (n = 570/676) of hearts turned down as distance could be utilized by pediatric programs. This proportion increased to 100% with 10 hours of support time. By addressing prolonged ischemic time due to distance, ESHP has the potential to increase the number of donors utilized in pediatric candidates. While no device exists for pediatrics, this analysis lends support to the importance of developing this technology.
Asunto(s)
Trasplante de Corazón , Adulto , Humanos , Niño , Donantes de Tejidos , Corazón , Perfusión , Sistema de RegistrosRESUMEN
BACKGROUND: Despite efforts, pediatric HTx candidates continue to have high waitlist mortality due to limited donor availability. However, there is a significant number of offered hearts not used due to concerns of viability. ESHP is a method for continuous perfusion of the donor heart that allows assessment and extended out-of-body time. It is imperative to understand healthcare stakeholders' perspectives on ESHP for implementation. Therefore, the aims of this qualitative study were to: (1) Explore pediatric stakeholders' perspectives toward ESHP; and (2) Identify barriers to widespread adoption of this technology. METHODS: Virtual focus groups were completed with pediatric HTx healthcare professional stakeholders. Following transcription of audio-recordings, the material was analyzed using content analysis. RESULTS: Four focus groups were completed with 17 participants, representing 12 institutions and three countries. Focus groups revealed varied understanding of both current and potential uses of ESHP. Participants did see the potential benefits of extending out-of-body time for and the ability to evaluate donor heart quality. However, concerns were expressed relating to patient selection, wait-list times, post-HTx outcomes, adverse events, and technical issues. These were felt to be important to understand in order to justify the costs of ESHP and impact on the healthcare system. CONCLUSIONS: This project represents the first qualitative formative evaluation of ESHP in pediatrics. The knowledge gained from stakeholders will form the basis for education initiatives, clinical trial design, and roll-out of new ESHP technologies designed for pediatrics.
Asunto(s)
Trasplante de Corazón , Humanos , Niño , Trasplante de Corazón/métodos , Donantes de Tejidos , Corazón , Perfusión/métodos , Grupos FocalesRESUMEN
Background: Cardiomyopathy (CM) is a rare childhood disease associated with morbidity and mortality. Limited data exist on paediatric CM in Canada. Given the rare nature, single-centre studies are not sufficiently powered to address important questions. Therefore, administrative health data may serve as a resource for the study of childhood CM. The goal of this study was to validate the accuracy of International Classification of Diseases (ICD)-based algorithms to identify paediatric CM in health databases using a clinical registry as the gold standard. Methods: The clinical registry was compiled from outpatient and inpatient records at the Stollery Children's Hospital (January 1, 2013, to December 31, 2021). Patients were categorized as having CM or screened without CM. Data were linked to administrative health databases using the patient's Unique Lifetime Identifier. Algorithms based on the presence of ICD, 10th Revision, codes for CM were then evaluated, and cross-tabulations against the clinical registry were generated. Accuracy, positive predictive value, negative predictive value, sensitivity, and specificity were calculated. Results: The clinical registry had 90 patients with CM and 249 screened without CM. The algorithms ruled out CM (high negative predictive value) but had variability in the ability to diagnose CM positive predictive value. The algorithm that performed the best was based on a diagnosis of CM in a hospitalization or 2 ambulatory visits. Conclusions: A combination of inpatient and outpatient databases can be used, with acceptable accuracy, to identify paediatric patients with CM. This finding allows for the use of the identified algorithm for the comprehensive study of paediatric CM in Canada.
Contexte: La cardiomyopathie (CM) est une maladie rare de l'enfance associée à des taux élevés de morbidité et de mortalité et sur laquelle les données sont limitées en contexte canadien. En raison de la rareté de cette maladie, les études monocentriques ne peuvent atteindre la puissance statistique nécessaire pour répondre à certaines questions importantes. Les données administratives sur la santé peuvent donc constituer une ressource intéressante pour examiner la CM chez les enfants. La présente étude visait à valider l'exactitude d'algorithmes fondés sur la Classification internationale des maladies (CIM) pour repérer les cas de CM pédiatrique dans des bases de données sur la santé, en utilisant un registre clinique comme référence. Méthodologie: Un registre clinique a été élaboré à partir des dossiers de clinique interne et externe du Stollery Children's Hospital (du 1er janvier 2013 au 31 décembre 2021). Les patients ont été classés en deux catégories : atteints de CM ou dépistés sans CM. Les données ont été liées aux bases de données administratives sur la santé en utilisant le numéro d'identification unique des patients (Unique Lifetime Identifier). Des algorithmes fondés sur les codes de la CIM-10 ont été évalués et des analyses croisées avec le registre clinique ont été réalisées. L'exactitude, la valeur prédictive positive (VPP), la valeur prédictive négative (VPN), la sensibilité et la spécificité des algorithmes ont été calculées. Résultats: Le registre clinique comprenait 90 patients atteints de CM et 249 patients dépistés sans CM. Les algorithmes permettaient d'exclure correctement la CM (VPN élevée), mais leur capacité à établir le diagnostic de CM variait (VPP). L'algorithme le plus performant était fondé sur l'attribution d'un code diagnostique de CM lors d'une hospitalisation ou de deux visites ambulatoires. Conclusions: La combinaison de bases de données sur les hospitalisations et sur les soins externes peut être utilisée pour identifier les enfants atteints de CM avec une exactitude acceptable. Cette observation corrobore l'utilisation de l'algorithme ciblé pour réaliser une étude exhaustive de la CM chez l'enfant au Canada.
RESUMEN
INTRODUCTION: The association between cirrhosis and driving performance is of particular clinical relevance because of the life-threatening safety issues both for the driver with cirrhosis and the general public. Study aims were to assess (i) driving competency through the use of an in-office computerized battery and on-road driving assessment (DriveABLE) and (ii) the association between minimal hepatic encephalopathy (MHE), in-office paper-pencil tools, and additional measures (e.g., frailty, depression, cognitive testing) with unsafe driving. METHODS: Patients were prospectively recruited from 2 tertiary care liver clinics. In-office tests and in-office and on-road assessments of driving competence were completed. The χ 2 test and 1-way analysis of variance were used to analyze differences among those with and without MHE. Logistic regression was used to evaluate predictors of an indeterminate/fail result on the in-office computerized driving assessment battery (DriveABLE Cognitive Assessment Tool [DCAT]). RESULTS: Eighty patients participated with a mean age of 57 years, 70% male, 75% Child-Pugh B/C, and 36% with a history of overt hepatic encephalopathy. Thirty percent met MHE criteria on both the psychometric hepatic encephalopathy score and the Stroop app tests. Only 2 patients (3%) were categorized as "unfit to drive" in the on-road driving test, one with MHE and the other without. Fifty-eight percent of the patients were scored as indeterminate/fail on the DCAT. This corresponded to a higher mean number of on-road driving errors (5.3 [SD 2.1] vs 4.2 [SD 1.6] in those who passed the DCAT, P = 0.01). Older age (odds ratio 1.3; confidence interval 1.1, 1.5; P = 0.001) and MHE by Stroop/psychometric hepatic encephalopathy score (odds ratio 11.0; confidence interval 2.3, 51.8; P = 0.002) were independently predictive of worse performance on the DCAT. DISCUSSION: Worse performance in in-office testing was associated with worse scores on a computerized driving assessment battery and more on-road driving errors, but in-office tools were insufficient to predict on-road driving failures. A diagnosis of MHE should not be used alone to restrict driving in patients with cirrhosis. At-risk patients require on-road driving tests under the supervision of driving regulatory agencies. Future studies should continue to refine and evaluate in-office or at-home testing to predict driving performance.
Asunto(s)
Encefalopatía Hepática , Humanos , Masculino , Persona de Mediana Edad , Femenino , Encefalopatía Hepática/diagnóstico , Encefalopatía Hepática/etiología , Encefalopatía Hepática/psicología , Cirrosis Hepática/complicaciones , Cirrosis Hepática/diagnóstico , Psicometría , Pruebas Neuropsicológicas , Modelos LogísticosRESUMEN
BACKGROUND: VAD support for early graft failure after HTx is a rare event in pediatrics. METHODS: We retrospectively describe our single-center experience with post-HTx VAD support in a cohort of patients transplanted between 01/05 and 12/20. RESULTS: Nine patients underwent VAD insertion in the early post-HTx period [median age 6.1 years (Range 0.3-20.3), median weight 17.6 kg (Range 3.5-65.0), and congenital heart disease (67%)]. Of the nine patients with early graft failure, almost half (44%) were implanted after 2015 and all of these patients had a pre-HTx plan for possible post-transplant VAD insertion. Time to VAD implant was a median of 0 day (Range 0-11). Total time on VAD support was a median of 12 days (Range 3.0-478.0). Two-thirds (n = 6; 67%) of the patients were weaned from support, retransplanted (11%) and two patients died (22%). In all of the patients where post-HTx VAD was anticipated there was 100% survival. CONCLUSIONS: In this small patient series, post-HTx VAD was a useful measure in selected patients especially with pre-HTx planning. However, more shared experiences to verify these findings are needed.
Asunto(s)
Insuficiencia Cardíaca , Trasplante de Corazón , Corazón Auxiliar , Pediatría , Humanos , Niño , Lactante , Preescolar , Adolescente , Adulto Joven , Adulto , Estudios Retrospectivos , Factores de Tiempo , Insuficiencia Cardíaca/cirugía , Resultado del TratamientoRESUMEN
BACKGROUND: Driveline infections (DLIs) are a common adverse event in patients on ventricular assist devices (VADs) with incidence ranging from 14% to 59%. DLIs have an impact on patients and the healthcare system with efforts to prevent DLIs being essential. Prior to our intervention, our program had no standard driveline management presurgery and postsurgery. The purpose of this Quality Improvement (QI) initiative was to reduce DLIs and related admissions among patients with VAD within the first year post implant. METHODS: In anticipation of the QI project, we undertook a review of the programs' current driveline management procedures and completed a survey with patients with VAD to identify current barriers to proper driveline management. Retrospective data were collected for a pre-QI intervention baseline comparison group, which included adult patients implanted with a durable VAD between 1 January 2017 and 31 July 2018. A three-pronged care pathway (CP) was initiated among patients implanted during August 2018 to July 2019. The CP included standardised intraoperative, postoperative and predischarge teaching initiatives and tracking. Using statistical process control methods, DLIs and readmissions in the first year post implant were compared between patients in the CP group and non-CP patients. P-charts were used to detect special cause variation. RESULTS: A higher proportion of CP group patients developed a DLI in the first year after implant (52% vs 32%). None developed a DLI during the index admission, which differed from the non-CP group and met criteria for special cause variation. There was a downward trend in cumulative DLI-related readmissions among CP group patients (55% vs 67%). There was no association between CP compliance and development of DLIs within 1 year post implant. CONCLUSION: The CP did not lead to a reduction in the incidence of DLIs but there was a decrease in the proportion of patients with DLIs during their index admission and those readmitted for DLIs within 1 year post implant. This suggests that the CP played a role in decreasing the impact of DLIs in this patient population. However, given the short time period of follow-up longer follow-up will be required to look for sustained effects.
Asunto(s)
Corazón Auxiliar , Infecciones Relacionadas con Prótesis , Adulto , Vías Clínicas , Corazón Auxiliar/efectos adversos , Humanos , Incidencia , Infecciones Relacionadas con Prótesis/epidemiología , Infecciones Relacionadas con Prótesis/etiología , Infecciones Relacionadas con Prótesis/prevención & control , Estudios RetrospectivosRESUMEN
Background Heart-healthy lifestyles promote lifelong cardiovascular health. However, patients with hypertrophic cardiomyopathy are often advised to avoid strenuous exercise because of the risk of sudden cardiac death. Given these restrictions, this study explored youth and parent perceptions of a heart-healthy lifestyle and the barriers and facilitators to this lifestyle. Methods and Results Youth and parents were purposefully recruited at 2 Canadian hospitals for this photovoice project. Participants were given cameras and took pictures of everyday heart-healthy or heart-unhealthy choices. Photos were discussed during one-on-one qualitative interviews with youth and parents separately to understand the photos' meaning and significance. Inductive descriptive thematic analysis was employed. A total of 16 youth (median age, 14.4 years [range, 10.5-17.7 years]; 63% boys) and 16 parents (100% women) participated. A total of 15 youth were activity restricted. Data analysis revealed 7 categories organized into perceptions of healthy living (health is holistic and individualized) and factors influencing engagement in healthy living (self-awareness, ownership and autonomy, feeling restricted and peer pressure, support from parents, and support from the cardiologist). Participants had a complex understanding of health and discussed the importance of physical, mental, and social well-being. Youth used self-awareness and taking responsibility as facilitators of healthy living. Healthy living was shaped by peers, parent role-modeling, and cardiologist recommendations. Conclusions This study depicts the realities for youth with hypertrophic cardiomyopathy and can be used to inform the development of responsive interventions. Holistic, patient-specific interventions may be more successful, and strategies such as shared decision making may be important to promote self-awareness and autonomy.
Asunto(s)
Cardiomiopatía Hipertrófica , Padres , Adolescente , Canadá , Niño , Ejercicio Físico , Femenino , Estilo de Vida Saludable , Humanos , Masculino , Investigación CualitativaRESUMEN
We report the first case of video capsule endoscopy usage to diagnose gastrointestinal bleeding in a pediatric patient on a ventricular assist device. The outcomes of this case are consistent with the findings of reports in adult patients, showing no patient complications, no pacemaker or ventricular assist device interactions, and successful identification of a gastrointestinal source of bleeding. Use of video capsule endoscopy in this patient changed the management plan and eliminated the need for further invasive investigations highlighting the potential utility of this diagnostic method in this patient population.
RESUMEN
BACKGROUND: Ventricular assist devices are important in the treatment of pediatric heart failure. Although paracorporeal pulsatile (PP) devices have historically been used, there has been increased use of paracorporeal continuous (PC) devices. We sought to compare the outcomes of children supported with a PP or PC, or combination of devices. METHODS: A retrospective review (2005 to 2019) was made of patients less than 19 years of age from a single center who received a PC, PP, or combination of devices. Patient characteristics were compared between device strategies, and Kaplan-Meier survival analysis was performed. RESULTS: Sixty-six patients were included: 62% male; 62% non-congenital heart disease; median age 0.9 years (interquartile range, 0.2 to 4.9); and median weight 8.5 kg (interquartile range, 4.3 to 17.7 kg). The PC devices were used in 45% of patients, PP in 35%, and a combination in 20%. Patients on PC devices had a lower median weight (P = .02) and a higher proportion of congenital heart disease (P = .02), and more patients required pre-ventricular assist device dialysis (P = .01). There was no difference in pre-ventricular assist device extracorporeal membrane oxygenation use (P = .15). There was a difference in survival among the three device strategies (P = .02). CONCLUSIONS: Differences in survival were evident, with patients on PC support having worse outcomes. Transition from PC to a PP devices was associated with a survival advantage. These findings may be driven by differences in patient characteristics across device strategies. Further studies are required to confirm these findings and to better understand the interaction between patient characteristics and device options.
Asunto(s)
Oxigenación por Membrana Extracorpórea , Cardiopatías Congénitas , Insuficiencia Cardíaca , Trasplante de Corazón , Corazón Auxiliar , Niño , Femenino , Cardiopatías Congénitas/cirugía , Insuficiencia Cardíaca/terapia , Ventrículos Cardíacos , Humanos , Lactante , Masculino , Estudios Retrospectivos , Resultado del TratamientoRESUMEN
BACKGROUND: Ventricular assist devices (VADs) are commonly used as a bridge to transplantation but may yield HLA sensitization. We evaluated the prevalence of HLA antibody (Ab) sampling pre- and post-VAD placement in pediatric and adult patients and notification of VAD status to the HLA laboratory. METHODS: All pediatric and adult patients who received a first-time VAD between 2005 and 2013 were included in this single-center retrospective review. Data were collected from the University of Alberta Hospital histocompatibility laboratory's information system and a local VAD database. RESULTS: In total, 106 patients were included (40 pediatric, median 3.0 years [interquartile range, 0.3-10.7]; 66 adult, 55.0 years [46.8-61.2]). HLA Ab sampling within 1-month pre-VAD occurred in 70% of pediatric and 79% of adult recipients (P = .215). Testing within 1 month of VAD placement occurred in 89% of pediatric and 67% of adult recipients (P = .012). For those with HLA Ab sampling within 30 days postimplant, notification to the HLA laboratory of VAD status occurred in 19 of 27 (70%) pediatric and 24 of 33 (73%) adult patients (P = .533). Of patients transplanted post VAD with HLA Ab samples collected, 12 of 28 (43%) and 13 of 38 (34%) adult recipients did not have notification of VAD status to the HLA laboratory (P = .322). CONCLUSIONS: There were inconsistencies in HLA Ab sampling and communication to the HLA laboratory surrounding VAD placement. Standardization of both HLA Ab assessment frequency after VAD implantation and communication regarding changes in clinical status and the occurrence of key sensitizing events such as VAD placement are imperative as patients await transplantation.
Asunto(s)
Insuficiencia Cardíaca , Trasplante de Corazón , Corazón Auxiliar , Adulto , Anticuerpos , Niño , Antígenos HLA , Humanos , Estudios RetrospectivosRESUMEN
OBJECTIVES: Pediatric patients implanted with a durable ventricular assist device are initially managed in the pediatric cardiac ICU but are eligible for discharge to the ward. Our objectives were to characterize discharge and readmission of ventricular assist device patients to the pediatric cardiac ICU, identify risk factors for readmission, and determine whether discharge or readmission is associated with mortality. DESIGN: Retrospective study. SETTING: Stollery Children's Hospital. PATIENTS: Patients implanted with a durable ventricular assist device at less than 18 years old between 2005 and 2016. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: There were 44 patients who underwent ventricular assist device implantation at a median age of 3.7 years (interquartile range, 0.6-9.0 yr), with the most common etiology being noncongenital heart disease (76.7%). Median time of total ventricular assist device support was 110.0 days (interquartile range, 42.3-212.3 d) with the median index pediatric cardiac ICU stay being 34.0 days (interquartile range, 19.8-81.0 d). Thirty patients (68.0%) were discharged to the ward with 18 (60.0%) having at least one readmission. The median time to first readmission was 18.0 days (interquartile range, 14.8-109.8 d) with a median of two readmissions per patient (interquartile range, 1.0-3.0). The most common reason for readmission was pump thrombosis (30.4%), followed by neurologic dysfunction (23.9%). There were no statistically significant pre- or post-implant factors associated with readmission, and readmission was not associated with mortality (p = 0.600). Univariate Kaplan-Meier survival analysis indicated that use of pre-implant extracorporeal membrane oxygenation, post-implant continuous renal replacement therapy, as well as failure to be discharged from the index pediatric cardiac ICU stay were associated with mortality. CONCLUSIONS: Readmissions to the pediatric cardiac ICU occurred in 60.0% of pediatric patients on durable ventricular assist devices with the first readmission occurring within a month of discharge from the index pediatric cardiac ICU stay. While readmission was not associated with mortality, lack of discharge from index pediatric cardiac ICU stay was likely due to a worse pre-implant clinical status.