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1.
Pediatr Transplant ; 28(3): e14726, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38553822

RESUMEN

BACKGROUND: Pediatric transplantation can be a stressful process for patients and caregivers. Some individuals may experience post-traumatic stress symptoms (PTSS) and post-traumatic growth (PTG) as a result. Although post-traumatic stress disorder (PTSD) has been well-studied in this population, the purpose of the present scoping review is to provide a first synthesis of the existing literature on PTG in pediatric transplant populations. METHODS: We conducted a literature search of PsycINFO and Scopus in May 2023. Eligible articles must have included a sample of solid organ transplant (SOT) or stem cell transplant (SCT) recipients under age 18, siblings of recipients, or caregivers; and must have examined PTG. RESULTS: Twenty-three studies were identified, and nine studies met inclusion criteria and were included in the review (n = 5 cross sectional; n = 4 qualitative). Cross-sectional studies examined demographic, mental health, and medical correlates of PTG in children and caregivers. PTG was correlated with PTSS among caregivers. Qualitative studies identified themes along each of the five factors of PTG. CONCLUSION: Findings overwhelmingly focused on caregiver PTG. Qualitative study findings align with the theoretical model of PTG. Additional research is needed to investigate PTG in siblings of children with a transplant and associations between PTG and medication adherence. This scoping review provides insight into positive change processes following a transplant among children and their caregivers.


Asunto(s)
Crecimiento Psicológico Postraumático , Trastornos por Estrés Postraumático , Humanos , Niño , Adolescente , Adaptación Psicológica , Cuidadores , Estudios Transversales , Receptores de Trasplantes , Trastornos por Estrés Postraumático/etiología
2.
Pediatr Transplant ; 27(4): e14497, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36895133

RESUMEN

BACKGROUND: Understanding the role of substance use is important in the equitable allocation of solid organs and may present an opportunity for improving outcomes among substance users who receive transplants. This scoping review presents findings related to substance use among pediatric and young adult transplant populations and suggests future directions. METHODS: A scoping review was conducted seeking studies related to substance use in pediatric and young adult transplant populations under the age of 39 years. Studies were deemed eligible if they collected data or addressed policy concerns and participants' mean age was below 39 years. RESULTS: Twenty-nine studies were identified as eligible for this review. Overall, policies around substance use are largely inconsistent throughout both pediatric and adult transplant centers. Findings indicated that substance use among pediatric and young adult transplant recipients is similar to or lower than healthy peers. Few studies addressed marijuana use and opioid misuse, among other substances. CONCLUSIONS: There is a general dearth of research on substance use in this population. The current findings suggest that substance use, although relatively less common, affects eligibility for transplant, may lead to poor outcomes, and affects medication adherence. Inconsistent substance use policies in transplant centers have the potential to result in bias. However, more research is needed on the effects of substance use among pediatric and young adult transplant candidates and recipients as well as on equitable policies for organ allocation for individuals who use substances.


Asunto(s)
Trastornos Relacionados con Opioides , Trasplante de Órganos , Humanos , Niño , Adolescente , Adulto Joven , Adulto , Receptores de Trasplantes , Trastornos Relacionados con Opioides/epidemiología
3.
Clin Trials ; 20(5): 528-535, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37269062

RESUMEN

BACKGROUND/AIMS: Medication non-adherence is a leading cause of transplant rejection, organ loss, and death; yet no rigorous controlled study to date has shown compelling clinical benefits from an adherence-improving intervention. Non-adherent patients are less likely to participate in trials, and therefore, most studies enroll a majority of adherent patients who do not stand to benefit from the intervention, as they do not have the condition (non-adherence) under investigation. The improving Medication Adherence in adolescent Liver Transplant recipients trial specifically targets non-adherent patients to investigate whether a remote intervention to improve adherence results in reduced incidence of biopsy-confirmed rejection. METHODS: Improving Medication Adherence in adolescent Liver Transplant is a randomized single-blind controlled multisite, multinational National Institutes of Health-funded trial involving 13 pediatric transplant centers in the United States and Canada. An innovative, objective adherence biomarker-the Medication Level Variability Index, which is the standard deviation of a series of medication blood levels for each patient, is used to identify non-adherent patients at risk for rejection. The index is computed using electronic health record information for all potentially eligible patients based on repeated reviews of the entire clinic's roster. Identified patients, after consent, are randomized to intervention versus control (treatment as usual) arms. The remote intervention is delivered for 2 years by trained interventionists who reside in various locations in the United States. The primary outcome is the incidence of biopsy-confirmed acute cellular rejection, as confirmed by a majority vote of three pathologists who are masked to the study allocation and clinical information. DISCUSSION: Improving Medication Adherence in adolescent Liver Transplant includes several innovative design elements. The use of a validated, objective adherence index to survey a large cohort of transplant recipients allows the teams to avoid bias inherent in both convenience sampling and referral-based recruitment and enroll only patients whose computed index indicates substantially increased risk of rejection. The remote intervention paradigm helps to engage patients who are by definition hard to engage. The use of an objective, masked medical (rather than behavioral) outcome measure reduces the likelihood of biases related to clinical information and ensures broad acceptance by the field. Finally, monitoring for potential adverse events related to increased medication exposure due to the adherence intervention acknowledges that a successful intervention (increasing adherence) could have detrimental side effects via increased exposure to and potential toxicity of the medication. Such monitoring is almost never attempted in clinical trials evaluating adherence interventions.


Asunto(s)
Trasplante de Hígado , Adolescente , Humanos , Adulto Joven , Cumplimiento de la Medicación , Evaluación de Resultado en la Atención de Salud , Método Simple Ciego , Encuestas y Cuestionarios , Estados Unidos
4.
Am J Transplant ; 22(3): 937-946, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-34837457

RESUMEN

Adolescent transplant recipients may encounter a range of potentially traumatic events (PTEs) pre- and posttransplant, yet little is known about the relationship between posttraumatic stress symptoms (PTSS) and medication adherence in this population. In the present study, adolescent recipients and caregivers completed psychosocial questionnaires at enrollment. Outpatient tacrolimus trough level data were collected over 1 year to calculate the Medication Level Variability Index (MLVI), a measure of medication adherence. Nonadherence (MLVI ≥2) was identified in 34.8% of patients, and most (80.7%) reported ≥1 PTE exposure. Levels of PTSS indicating likely posttraumatic stress disorder (PTSD) were endorsed by 9.2% of patients and 43.7% of caregivers. PTSS and MLVI were significantly correlated in the liver subgroup (r = .30, p = .04). Hierarchical multivariable linear regression analyses revealed overall patient PTSS were significantly associated with QoL (p < .001). PTEs are common in adolescent recipients; a minority may meet criteria for PTSD. PTSS screening to identify nonadherence risk requires further investigation and addressing PTSS may improve QoL. Caregivers appear at greater risk for PTSD and may require their own supports. The study was approved by each participating center's Institutional Review Board.


Asunto(s)
Trastornos por Estrés Postraumático , Adolescente , Niño , Humanos , Cumplimiento de la Medicación , Calidad de Vida , Trastornos por Estrés Postraumático/epidemiología , Trastornos por Estrés Postraumático/etiología , Encuestas y Cuestionarios , Receptores de Trasplantes/psicología
5.
Pediatr Transplant ; 26(1): e14152, 2022 02.
Artículo en Inglés | MEDLINE | ID: mdl-34661316

RESUMEN

BACKGROUND: Since the start of the COVID-19 pandemic and consequent lockdowns, the use of telehealth interventions has rapidly increased both in the general population and among transplant recipients. Among pediatric transplant recipients, this most frequently takes the form of interventions on mobile devices, or mHealth, such as remote visits via video chat or phone, phone-based monitoring, and mobile apps. Telehealth interventions may offer the opportunity to provide care that minimizes many of the barriers of in-person care. METHODS: The present review followed the PRISMA guidelines. Sources up until October 2020 were initially identified through searches of PsycInfo® and PubMed® . RESULTS: We identified ten papers that reported findings from adult interventions and five studies based in pediatrics. Eight of the adult publications stemmed from the same two trials; within the pediatric subset, this was the case for two papers. Studies that have looked at mHealth interventions have found high acceptability rates over the short run, but there is a general lack of data on long-term use. CONCLUSIONS: The literature surrounding pediatric trials specifically is sparse with all findings referencing interventions that are in early stages of development, ranging from field tests to small feasibility trials. The lack of research highlights the need for a multi-center RCT that utilizes robust measures of medication adherence and other outcome variables, with longer-term follow-up before telehealth interventions should be fully embraced.


Asunto(s)
COVID-19/prevención & control , Accesibilidad a los Servicios de Salud , Trasplante de Órganos , Pediatría/métodos , Cuidados Posoperatorios/métodos , Telemedicina/métodos , Adulto , Actitud Frente a la Salud , Canadá , Niño , Europa (Continente) , Costos de la Atención en Salud/estadística & datos numéricos , Humanos , Pediatría/economía , Pediatría/tendencias , Cuidados Posoperatorios/economía , Cuidados Posoperatorios/tendencias , Telemedicina/economía , Telemedicina/tendencias , Estados Unidos
6.
Am J Transplant ; 21(9): 3112-3122, 2021 09.
Artículo en Inglés | MEDLINE | ID: mdl-33752251

RESUMEN

Remote interventions are increasingly used in transplant medicine but have rarely been rigorously evaluated. We investigated a remote intervention targeting immunosuppressant management in pediatric lung transplant recipients. Patients were recruited from a larger multisite trial if they had a Medication Level Variability Index (MLVI) ≥2.0, indicating worrisome tacrolimus level fluctuation. The manualized intervention included three weekly phone calls and regular follow-up calls. A comparison group included patients who met enrollment criteria after the subprotocol ended. Outcomes were defined before the intent-to-treat analysis. Feasibility was defined as ≥50% of participants completing the weekly calls. MLVI was compared pre- and 180 days postenrollment and between intervention and comparison groups. Of 18 eligible patients, 15 enrolled. Seven additional patients served as the comparison. Seventy-five percent of participants completed ≥3 weekly calls; average time on protocol was 257.7 days. Average intervention group MLVI was significantly lower (indicating improved blood level stability) at 180 days postenrollment (2.9 ± 1.29) compared with pre-enrollment (4.6 ± 2.10), p = .02. At 180 days, MLVI decreased by 1.6 points in the intervention group but increased by 0.6 in the comparison group (p = .054). Participants successfully engaged in a long-term remote intervention, and their medication blood levels stabilized. NCT02266888.


Asunto(s)
Trasplante de Hígado , Trasplante de Órganos , Niño , Humanos , Inmunosupresores/uso terapéutico , Tacrolimus , Receptores de Trasplantes
7.
Liver Transpl ; 27(1): 106-115, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-32978871

RESUMEN

A central pathology or site reading of biopsy slides is used in liver transplant clinical trials to determine rejection. We evaluated interrater reliability of readings of "rejection or not" using digitized slides from the Medication Adherence in Children who had a Liver Transplant (MALT) study. Four masked experienced pathologists read the digitized slides and then reread them after a study-specific histologic endpoint development program. Agreement was expressed throughout as a Kappa or Fleiss Kappa statistic (Ò¡). A Ò¡ > 0.6 was predefined as desirable. Readings were correlated with immunosuppressant adherence (the Medication Level Variability Index, [MLVI]), and maximal liver enzyme levels during the study period. Interrater agreement between site and central review in MALT, and between 4 pathologists later on, was low (Ò¡ = 0.44, Fleiss Ò¡ = 0.41, respectively). Following the endpoint development program, agreement improved and became acceptable (Ò¡ = 0.71). The final reading was better-aligned with maximal gamma-glutamyl transferase levels and MLVI as compared with the original central reading. We found substantial disagreement between experienced pathologists reading the same slides. A unique study-specific procedure improved interrater reliability to the point it was acceptable. Such a procedure may be indicated to increase reliability of histopathologic determinations in future research, and perhaps also clinically.


Asunto(s)
Trasplante de Hígado , Biopsia , Niño , Rechazo de Injerto/diagnóstico , Humanos , Inmunosupresores/uso terapéutico , Trasplante de Hígado/efectos adversos , Variaciones Dependientes del Observador , Reproducibilidad de los Resultados
8.
Pediatr Transplant ; 24(1): e13642, 2020 02.
Artículo en Inglés | MEDLINE | ID: mdl-31880384

RESUMEN

PTSS as well as symptoms of depression have been reported in children who experience a serious medical adversity as well as their caretakers. The adverse effects of PTSS, when experienced by the patients, on medical outcomes have been clearly documented. However, the impact of those symptoms, if any, when experienced by the caretakers on child outcomes has not been investigated prospectively. We evaluated whether caregiver PTSS and depression symptoms predict adherence to medications and medical outcomes in a prospective multisite study. Four hundred children participated in MALT. Caretaker PTSS were assessed by the IES and depressive symptoms by CES-D. During 2 years of follow-up, the MLVI was used to determine adherence. Centrally read, biopsy-confirmed organ rejection was the primary medical outcome. IES scores were not associated with either adherence or rejection outcomes. In contrast, there were significant correlations between CES-D (depression) scores and lower adherence, r = .13, P < .001, and a trend toward higher scores on the CES-D among those whose children had experienced rejection, 12.4 (SD = 10.9) versus 9.1 (SD = 8.6), P = .077. Caregivers' PTSS were not a risk factor for poor child outcomes in this cohort, whereas depression symptoms were associated with non-adherence and possibly increased rates of rejection. Further study can validate if caregivers' depression as opposed to PTSS confers greater risk and should be a focus during the clinical care of medically ill children.


Asunto(s)
Cuidadores/psicología , Depresión/etiología , Rechazo de Injerto/etiología , Trasplante de Hígado/psicología , Cumplimiento de la Medicación/psicología , Trastornos por Estrés Postraumático/etiología , Adolescente , Niño , Preescolar , Depresión/diagnóstico , Depresión/epidemiología , Femenino , Estudios de Seguimiento , Rechazo de Injerto/tratamiento farmacológico , Rechazo de Injerto/prevención & control , Humanos , Inmunosupresores/uso terapéutico , Lactante , Modelos Lineales , Modelos Logísticos , Masculino , Cumplimiento de la Medicación/estadística & datos numéricos , Estudios Prospectivos , Factores de Riesgo , Trastornos por Estrés Postraumático/diagnóstico , Trastornos por Estrés Postraumático/epidemiología
9.
Cleft Palate Craniofac J ; 57(2): 177-185, 2020 02.
Artículo en Inglés | MEDLINE | ID: mdl-31514527

RESUMEN

OBJECTIVE: To determine, for intervention development, the psychosocial needs of adolescents diagnosed with a craniofacial condition who attended focus group sessions. DESIGN: A mixed-methods design combining qualitative focus groups with quantitative measures. SETTING: An outpatient clinic at a major medical center in Manhattan, New York. PARTICIPANTS: Fourteen adolescents, aged 14 to 18, with craniofacial conditions. MAIN MEASURES: Participants completed measures assessing a range of psychological constructs. Average scores were compared to clinical cutoff scores and normative data for adolescents. The 2 focus groups were coded using an inductive approach to assess pertinent themes. Additionally, the acceptability and feasibility of a proposed intervention was measured. RESULTS: Adolescents with craniofacial conditions were within normal ranges for quality of life, self-esteem, and body image and they reported higher resiliency. They were above cutoff scores for perceived stress and post-traumatic stress disorder symptoms and below cutoff scores for mindfulness. When compared to normative samples, they displayed higher perceived social support, but lower coping. Based on qualitative analyses, 6 themes emerged: stress, bullying, coping, resiliency, mindfulness, and social support. Both qualitative and quantitative analyses revealed most participants were supportive of a future intervention for this population. CONCLUSIONS: The present study identified several factors associated with psychological well-being of adolescents with craniofacial diagnoses and demonstrates the importance of creating interventions to target specific psychosocial needs. Findings from this study may guide researchers in developing and refining a specific program for this population and provide information to help those with craniofacial conditions who are experiencing psychosocial challenges.


Asunto(s)
Atención Plena , Calidad de Vida , Adaptación Psicológica , Adolescente , Humanos , New York , Autoimagen
10.
Liver Transpl ; 24(1): 80-88, 2018 01.
Artículo en Inglés | MEDLINE | ID: mdl-28779546

RESUMEN

Knowledge of the longterm trajectory of nonadherence to immunosuppressants can inform decisions regarding organ allocation, adherence monitoring, and intervention efforts. The Medication Adherence in Children Who Had a Liver Transplant (MALT) prospective multisite study followed 400 pediatric and adolescent liver transplant recipients for 2 years, using the Medication Level Variability Index to monitor adherence. We hypothesized that adherence is an unstable (fluctuating) phenomenon: that patients who are adherent in year 1 may become nonadherent in year 2, and vice versa. However, we also hypothesized that a majority (more than 50%) of nonadherent patients remain nonadherent over time. We further hypothesized that the longer nonadherence lasts, the higher the likelihood of adverse events (rejection). Finally, we explored the effect of socioeconomic factors on the evolution of adherence over time. Most (59.7%) of the MALT patients who were nonadherent in year 1 remained so in year 2; 18.5% of patients who were adherent in year 1 became nonadherent in year 2. Only 4.4% of patients who were adherent in both year 1 and year 2 had a rejection, compared with 22.9% of patients who were nonadherent during 1 of the years, and 34.9% of those who were nonadherent in both years (P < 0.001), establishing a "dose-dependent" effect of adherence on transplant outcomes. Single-parent households were associated with worsening adherence. Our results suggest that good baseline adherence does not guarantee adherence later on, that nonadherence is likely to persist in the absence of interventions, and that monitoring of adherence and interventions to improve it should be expected to last for years if transplant outcomes are to be improved. Liver Transplantation 24 80-88 2018 AASLD.


Asunto(s)
Rechazo de Injerto/prevención & control , Inmunosupresores/uso terapéutico , Trasplante de Hígado/efectos adversos , Cumplimiento de la Medicación/estadística & datos numéricos , Adolescente , Niño , Preescolar , Femenino , Rechazo de Injerto/epidemiología , Rechazo de Injerto/inmunología , Supervivencia de Injerto/efectos de los fármacos , Humanos , Lactante , Masculino , Selección de Paciente , Estudios Prospectivos , Factores de Riesgo , Factores Socioeconómicos
11.
J Pediatr ; 193: 128-133.e2, 2018 02.
Artículo en Inglés | MEDLINE | ID: mdl-29162346

RESUMEN

OBJECTIVE: To further refine a measure of self-management, the Responsibility and Familiarity with Illness Survey (REFILS), and to determine if this score predicts medication adherence and, thus, fewer instances of allograft rejection among pediatric liver transplant recipients. STUDY DESIGN: Participants were 400 liver transplant recipients and their parents recruited for the Medication Adherence in Children Who Had a Liver Transplant study, from 5 US pediatric transplant centers. The REFILS was administered to participants (ages 9-17 years) and their parents at enrollment (n = 213 completed dyads). The REFILS scores, and a discrepancy score calculated between patient and parent report of the patient's self-management, were used to predict Medication Level Variability Index (MLVI), a measure of medication adherence (higher MLVI = more variability in medication levels) and central pathologist-diagnosed rejection over a 2-year follow-up. RESULTS: When patients reported greater self-management, their adherence was lower (higher MLVI, r = 0.26, P < .01). Discrepancies between patient and parent report (patients endorsing higher levels than parents) were associated with lower adherence (r = 0.20, P < .01). Greater patient-reported self-management and higher discrepancy scores also predicted rejection. CONCLUSIONS: We found that when patients endorse more responsibility for their care, clinical outcomes are worse, indicating that indiscriminate promotion of self-management by adolescents may not be advisable. A discrepancy between patient and parent perception of self-management emerged as a novel strategy to gauge the degree of risk involved in transitioning care responsibilities to the child.


Asunto(s)
Rechazo de Injerto/diagnóstico , Trasplante de Hígado/estadística & datos numéricos , Cumplimiento de la Medicación/estadística & datos numéricos , Automanejo/métodos , Adolescente , Niño , Preescolar , Estudios de Cohortes , Femenino , Rechazo de Injerto/epidemiología , Rechazo de Injerto/etiología , Humanos , Lactante , Masculino , Padres , Estudios Prospectivos , Psicometría/métodos , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Resultado del Tratamiento , Estados Unidos
12.
J Pediatr Gastroenterol Nutr ; 67(2): 169-172, 2018 08.
Artículo en Inglés | MEDLINE | ID: mdl-29620594

RESUMEN

OBJECTIVES: Coping with patient death among pediatric liver transplant teams has received little attention despite general recognition of the potentially negative emotional consequences associated with such loss. The purpose of this study was to investigate the ways in which members of pediatric liver transplant teams cope with the death of patients on the waitlist and post-transplant and the institutional resources available to facilitate this coping. METHODS: Participants included 120 physicians, nurses, and mental health professionals from multiple transplant centers across the United States. Participants completed an online questionnaire that assessed the availability of formal coping resources at their institutions, informal sources of support used to cope with patient death, and as indices of coping, bereavement, and emotional exhaustion symptoms experienced. RESULTS: Debriefing, the most commonly offered support, was available to about half (55.8%) of the sample; yet, nearly all respondents (98.3%) indicated that debriefing would be useful. On average, bereavement and emotional exhaustion levels were comparable to normative data, but patterns of coping varied based on participants' position within the transplant team. For participants who reported that debriefing was available at their institutions, emotional exhaustion was lower. CONCLUSIONS: Overall, formal supports were inconsistently offered to pediatric transplant team members. Team members expressed high acceptability for debriefing, which has been associated with benefits in other populations, and findings indicated better coping in the transplant setting when it was offered.


Asunto(s)
Adaptación Psicológica , Aflicción , Trasplante de Hígado , Grupo de Atención al Paciente , Sistemas de Apoyo Psicosocial , Niño , Servicios de Salud del Niño , Humanos , Encuestas y Cuestionarios , Estados Unidos
13.
Clin Transplant ; 31(6)2017 06.
Artículo en Inglés | MEDLINE | ID: mdl-28370346

RESUMEN

A growing number of older adults are undergoing liver transplantation (LT) in the United States. In some settings, it is thought that adherence declines with age. This retrospective study examined adherence and clinical outcomes in older vs younger adult LT recipients. Medical records of adult LT recipients from 2009 to 2012 from a single urban center were reviewed. The medication level variability index (MLVI) was the predefined primary outcome, with nonadherence defined as MLVI >2.5. The secondary outcome was incidence of rejection. Outcomes were evaluated starting 1 year post-LT until 2015. A total of 42 of 248 patients were ≥65 at transplant. Older adults had significantly better adherence than younger ones (65%≥65 were adherent vs 42% younger adults; chi-square two-tailed P=.02). Survival analyses of rejection between age groups censored by time since transplant showed no difference among the four age groups (χ2 =0.84, P=.84). Older age was not found to be a risk factor for reduced adherence or graft rejection in patients surviving at least 1 year post-LT.


Asunto(s)
Rechazo de Injerto/tratamiento farmacológico , Inmunosupresores/uso terapéutico , Trasplante de Hígado/efectos adversos , Cumplimiento de la Medicación/estadística & datos numéricos , Complicaciones Posoperatorias/tratamiento farmacológico , Adulto , Factores de Edad , Anciano , Femenino , Estudios de Seguimiento , Rechazo de Injerto/etiología , Supervivencia de Injerto , Humanos , Masculino , Persona de Mediana Edad , Complicaciones Posoperatorias/etiología , Pronóstico , Estudios Retrospectivos , Factores de Riesgo , Adulto Joven
14.
J Pediatr Gastroenterol Nutr ; 64(4): e83-e87, 2017 04.
Artículo en Inglés | MEDLINE | ID: mdl-27755342

RESUMEN

OBJECTIVES: Autoimmune hepatitis (AIH) and primary sclerosing cholangitis (PSC) are progressive immune-mediated inflammatory diseases that may require liver transplant (LT). Outcomes in children undergoing LT for these diseases are poorly studied in the pediatric end-stage liver disease era. We aimed to characterize the outcome of LT in children with AIH and PSC. METHODS: Children 18 years or younger with PSC or AIH who had a first, isolated LT from 2002 to 2012 were identified from the United Network for Organ Sharing database. Graft and patient outcomes were studied. RESULTS: A total of 174 children with AIH and 113 with PSC were transplanted in the study period. One-year patient survival was 95.4% for AIH and 97.3% for PSC. Five-year patient survival was 91.4% for AIH and 92.9% for PSC. Patient survival was not significantly different between the 2 groups. Forty-four (25.2%) children with AIH were listed as status 1 for transplant (fulminant hepatic failure at presentation or acute-on-chronic disease). Patients transplanted as status 1 had significantly lower patient survival compared with patients transplanted with AIH and end-stage liver disease. The one- and five-year graft survival rates were not significantly different between patients with AIH and PSC. CONCLUSION: Children with AIH transplanted as status 1 had significantly lower patient survival rates but similar graft survival rates to children with chronic AIH. Children transplanted for AIH versus PSC showed no significant differences in patient or graft survival at both 1 and 5 years.


Asunto(s)
Colangitis Esclerosante/complicaciones , Enfermedad Hepática en Estado Terminal/cirugía , Hepatitis Autoinmune/complicaciones , Fallo Hepático Agudo/cirugía , Trasplante de Hígado , Adolescente , Niño , Preescolar , Bases de Datos Factuales , Enfermedad Hepática en Estado Terminal/etiología , Enfermedad Hepática en Estado Terminal/mortalidad , Femenino , Estudios de Seguimiento , Supervivencia de Injerto , Humanos , Lactante , Recién Nacido , Fallo Hepático Agudo/etiología , Fallo Hepático Agudo/mortalidad , Masculino , Tasa de Supervivencia
15.
Pediatr Transplant ; 21(8)2017 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-28984072

RESUMEN

Medication adherence is an important determinant of transplant outcomes. Attempts to investigate adherence are frequently undermined by selection bias: It is very hard to recruit and retain non-adherent patients in research efforts. This manuscript presents recruitment strategies and results from the MALT (Medication Adherence in children who had a Liver Transplant) multisite prospective cohort study. MALT sites recruited 400 pediatric liver transplant patients who agreed to be followed for 2 years. The primary purpose was to determine whether a marker of adherence, the Medication Level Variability Index (MLVI), predicts rejection outcomes. The present manuscript describes methods used in MALT to ensure that a representative sample was recruited, and presents detailed recruitment results. MALT sites were able to recruit a nationally representative sample, as determined by a comparison between the MALT cohort and a national sample of transplant recipients. Strategies that helped ensure that the sample was representative included monitoring of the outcome measure in comparison with a national sample, drastically limiting patient burden, and specific recruitment methods. We discuss the importance of a representative sample in adherence research and recommend that future efforts to study adherence pay special attention to sample characteristics.


Asunto(s)
Rechazo de Injerto/prevención & control , Inmunosupresores/uso terapéutico , Trasplante de Hígado , Cumplimiento de la Medicación , Adolescente , Niño , Preescolar , Técnicas de Apoyo para la Decisión , Femenino , Estudios de Seguimiento , Rechazo de Injerto/diagnóstico , Rechazo de Injerto/etiología , Humanos , Lactante , Masculino , Cumplimiento de la Medicación/estadística & datos numéricos , Selección de Paciente , Estudios Prospectivos , Sesgo de Selección
16.
J Pediatr Nurs ; 32: 8-11, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-27836372

RESUMEN

PURPOSE: Previous research on children with HCV has examined patient psychosocial outcomes but little is known about the impact of HCV and its prolonged treatment, which includes weekly injections and oral medications for 6-12 months, on caregivers and families. The present study aimed to address this gap. DESIGN AND METHODS: Using a case series design (N=10), baseline distress levels of individuals and families as well as changes during HCV treatment were examined. A brief patient, caregiver, and family assessment packet was given before and immediately after treatment, but before the final outcome of treatment was known. During the study period, 10 families at our site began treatment for HCV. Each family was given a battery assessing patient quality of life, (the Pediatric Quality of Life Inventory; PedsQL), caregiver distress related to their child's illness (Impact of Events Scale; IES), and overall family functioning (Family Assessment Device; FAD). RESULTS: At baseline, patients displayed poorer quality of life than population norms, caregiver distress was elevated and family functioning was also in the "stressed" range. After treatment, all parameters worsened. CONCLUSIONS: In conclusion, in this case series of patients in treatment for HCV, significant psychosocial distress was noted for individuals and families and this was exacerbated over the course of treatment. PRACTICE IMPLICATIONS: Caregivers may benefit from additional support given the implications of HCV and grueling nature of its treatment. Broadly, the impact of continuous intensive treatments on families perhaps should be monitored.


Asunto(s)
Cuidadores/psicología , Protección a la Infancia/psicología , Hepatitis C/psicología , Hepatitis C/terapia , Relaciones Padres-Hijo , Adaptación Psicológica , Cuidadores/estadística & datos numéricos , Niño , Protección a la Infancia/estadística & datos numéricos , Preescolar , Salud de la Familia , Femenino , Humanos , Calidad de Vida
17.
J Pediatr ; 168: 193-197.e3, 2016 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-26505291

RESUMEN

OBJECTIVE: To evaluate whether a psychosocial screening program that included free and flexible access to mental health (MH) consultation resulted in increased rate of consultations. STUDY DESIGN: This is a post hoc review of a clinical screening program in a pediatric food allergy clinic in New York City. Screening was limited to 2 days per week, providing an opportunity to compare screened and nonscreened cohorts. Previous results from more than 1000 other families were analyzed to create the 1-page screening questionnaire. Participants were children with allergies and their parents who sought care at the clinic between March and September 2013. Parents were screened for distress and quality of life burden related to their child's allergy, and children were screened for anxiety, bullying, and quality of life. The predefined primary outcome was the percentage of families who received the free MH consultation after screening vs no-screening days in the allergy clinic. RESULTS: The 3143 encounters during the study period included 1171 on screening days and 1972 on no-screening days. Most (86%) eligible families completed the screen. Almost one-half (44%) met the initial screening thresholds. A total of 71 families (6.1% of screening days encounters) were referred to a MH consultation after a secondary review, but only 11 (1% of screening days encounters) scheduled a MH appointment. Eighteen families from the no-screening days came to a MH evaluation (1% of no-screening days encounters). CONCLUSION: Screening did not lead to enhanced MH follow-up. Resources may be better used on ensuring the availability of MH care rather than on screening in pediatric specialty clinics.


Asunto(s)
Trastornos Mentales/diagnóstico , Adolescente , Niño , Preescolar , Femenino , Humanos , Lactante , Masculino , Pediatría , Calidad de Vida , Derivación y Consulta , Adulto Joven
19.
J Pediatr Gastroenterol Nutr ; 62(2): 220-5, 2016 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-26418214

RESUMEN

OBJECTIVES: Liver transplantation (LT) in children with biliary atresia (BA) is often performed because of poor bile drainage, complications of biliary cirrhosis, or recurrent cholangitis. Poor bile drainage after a Kasai hepatoportoenterostomy is the primary driver for LT in infancy. The aim of the present study was to compare the clinical characteristics and outcome of first isolated liver transplantation for infants with BA who underwent transplant before 2 years of age (transplanted at infancy [TAI]) with children transplanted later in life (age 2-<18 years = transplanted at childhood [TAC]). METHODS: Children with BA who underwent LT between 2002 and 2012 were identified from the United Network for Organ Sharing Standard Transplant Analysis and Research data set files. RESULTS: A total of 1818 children underwent first isolated liver transplantation for BA (TAI 1408 [77.4%]; TAC 410 [22.6%]). One and 5-year patient survival of the TAI and TAC patients was 95.2%, 93.8%, and 97.8 %, 97.1%, respectively (P < 0.01 for both periods). One and 5-year graft survival of the TAI and TAC patients was 87.6%, 84.6 % and 93.2%, 90.7%, respectively (P < 0.01 for both periods). Removal from the waitlist for disease progression or death was significantly higher for TAI compared with TAC (120 patients [6.3%] vs 21 [3.7%], P = 0.02). Cold ischemic time was found to be the prognostic factor for death after LT in TAI, whereas being on life support was a poor prognostic factor in TAC by multivariate risk factor analysis. CONCLUSIONS: The vast majority of transplants for BA occur in children <2 years of age. Younger patients with BA had significantly higher waitlist and posttransplant mortality. Given the consistently poorer outcomes, there is an urgent need to find methods to improve bile drainage after the Kasai hepatoportoenterostomy.


Asunto(s)
Atresia Biliar/cirugía , Supervivencia de Injerto , Trasplante de Hígado/mortalidad , Portoenterostomía Hepática/efectos adversos , Adolescente , Factores de Edad , Conductos Biliares/patología , Conductos Biliares/cirugía , Atresia Biliar/complicaciones , Niño , Preescolar , Colangitis/etiología , Colangitis/cirugía , Femenino , Humanos , Lactante , Masculino , Pronóstico , Factores de Riesgo , Análisis de Supervivencia , Resultado del Tratamiento , Listas de Espera
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