Applications of motivational interviewing in adolescent solid organ transplant.

BACKGROUND: Adolescence is a developmental period that is known for the highest risk of difficulties with adoption and maintenance of health behaviors for successful transplant. Motivational interviewing (MI) has been demonstrated to be an effective strategy in the management of modifiable factors impacting adherence in both adult transplant and analogous pediatric chronic illness populations. AIMS: This paper describes MI and its applicability to adolescent transplant, providing examples of its potential use at each stage of the transplant journey. MATERIALS AND METHODS: Literature on the principles and utilization of MI are reviewed, as well as the use of MI in adult transplant and similar pediatric populations. RESULTS: Evidence suggests high applicability of concepts of MI to pediatric transplant. DISCUSSION: Systems-level factors influencing health behavior change are discussed, along with the importance of recognizing and managing provider bias in MI-based interactions. MI does not require a licensed behavioral health provider to use it effectively; rather, it can be used by various multidisciplinary team members throughout the course of clinical care. CONCLUSION: MI shows great promise as a useful intervention through all stages in the transplant journey. Though particularly well-suited to adolescents, its principles are effective across the lifespan, including with caregivers. It represents an interactional style for use by multidisciplinary team members in many patient-and caregiver-facing scenarios. As the goal is to support the patient's autonomy in decision-making, it is important for providers to recognize their own biases. Further resources for training are provided.

Predicting psychosocial risk in pediatric kidney transplantation: An exploratory cluster analysis of a revised Pediatric Transplant Rating Instrument.

BACKGROUND: The Pediatric Transplant Rating Instrument (P-TRI) is a 17-item scale developed to assess psychosocial risk factors for poor outcomes after solid organ transplantation. Research has identified the limitations of the original instrument and proposed revisions to improve clinical utility. This project examined patterns of risk in children being evaluated for kidney transplant using a revised P-TRI. METHODS: A multidisciplinary kidney transplant team revised the P-TRI. A social worker and a psychologist collaboratively completed the modified instrument for 37 children after the psychosocial pretransplant evaluation. Electronic medical records were reviewed for transplant status (transplanted, active waitlist, inactive) 1 year later. Exploratory cluster analyses and chi-square tests examined patterns of risk and correlates with cluster membership. RESULTS: Three clusters were identified. The high-risk group (29.7%) had difficulties with medication and appointment adherence, strained relationships with the medical team, and the presence of parent psychiatric history. The medium-risk group (35.1%) had difficulties with parent knowledge, financial strain, and risk factors for medication nonadherence. The low-risk group (35.1%) demonstrated no difficulties with adherence or financial strain. Clusters were prospectively associated with transplant status, such that those in the high-risk group were less likely to be transplanted within 1 year post-evaluation. CONCLUSIONS: The revised P-TRI demonstrated good construct validity as risk level appeared to be associated with transplant listing status 1 year post-evaluation. These results suggest that standardized pretransplant psychosocial risk assessment tools may have value in optimizing transplant access if they can be paired with targeted, multidisciplinary interventions to address concerns early in the transplant process.

International Pediatric Transplant Association (IPTA) position statement supporting prioritizing pediatric recipients for deceased donor organ allocation.

A position statement of the International Pediatric Transplant Association endorsing prioritizing pediatric recipients for deceased donor organ allocation, examining the key ethical arguments that serve as the foundation for that position, and making specific policy recommendations to support prioritizing pediatric recipients for deceased donor organ allocation globally.

A systematic review of social determinants of health in pediatric organ transplant outcomes.

BACKGROUND: Equitable access to pediatric organ transplantation is critical, although risk factors negatively impacting pre- and post-transplant outcomes remain. No synthesis of the literature on SDoH within the pediatric organ transplant population has been conducted; thus, the current systematic review summarizes findings to date assessing SDoH in the evaluation, listing, and post-transplant periods. METHODS: Literature searches were conducted in Web of Science, Embase, PubMed, and Cumulative Index to Nursing and Allied Health Literature databases. RESULTS: Ninety-three studies were included based on pre-established criteria and were reviewed for main findings and study quality. Findings consistently demonstrated disparities in key transplant outcomes based on racial or ethnic identity, including timing and likelihood of transplant, and rates of rejection, graft failure, and mortality. Although less frequently assessed, variations in outcomes based on geography were also noted, while findings related to insurance or SES were inconsistent. CONCLUSION: This review underscores the persistence of SDoH and disparity in equitable transplant outcomes and discusses the importance of individual and systems-level change to reduce such disparities.

5-Year Activity and Participation Outcomes of the First Successful Pediatric Bilateral Hand Transplantation: A Case Report.

AIMS: Describe the 5-year outcomes of the first successful pediatric bilateral hand transplantation. METHODS: The child underwent quadrimembral amputation at age two and received bilateral hand allografts at age eight. Rehabilitation included biomechanical, neurorehabilitation, and occupational approaches in acute and outpatient settings. Therapist observed outcomes, patient-reported measures, and parent-reported measures were repeated over a 5-year period. RESULTS: Observation assessments revealed functional dexterity skills and modified independence to full independence with self-care activities. The parent reported the child had moderate difficulty with upper extremity functioning 25-, 41-, and 48-months post-transplantation, and mild difficulty at 60-months; the child reported no difficulties in this domain at 41 months. Five years post-transplantation the child reported enjoying many age-appropriate activities, and high-quality peer relations were endorsed by both parent and child. CONCLUSION: The child developed hand movements for daily activities and was completing daily activities with improved efficiency. Health-related quality of life outcomes were favorable.

Mental health disorders and emergency resource use and outcomes in ventricular assist device supported patients.

There are limited data describing the prevalence of mental health disorders (MHDOs) in patients with ventricular assist devices (VADs), or associations between MHDOs and resource use or outcomes. We used the Nationwide Emergency Department Sample administrative database to analyze 44,041 ED encounters for VAD-supported adults from 2010 to 2017, to assess the relationship between MHDOs and outcomes in this population. MHDO diagnoses were present for 23% of encounters, and were associated with higher charges and rates of admission, but lower mortality.

Pediatric Hand Transplantation: A Decision Analysis.

Background: The first successful bilateral pediatric hand transplant was performed in 2015. Previous hand transplant decision analysis models have focused on the adult population. This model principally aimed to determine whether adverse outcomes associated with immunosuppression outweigh the benefits of performing bilateral hand transplant surgery in a pediatric candidate. The model also conceptualized the valuation of losing years of life and sought to determine the impact of that valuation on the surgical decision. Methods: A decision model compared undergoing bilateral hand transplant surgery with using prosthetics for an 8-year-old patient. The outcome measure used was quality adjusted life years (QALYs), and sensitivity analysis was performed on the immunosuppressive risks associated with the surgical decision, as well as the perceived valuation of aversion to life years lost. Results: The decision to perform surgery was marginally optimal compared to the prosthetic decision (50.11 QALY vs. 47.95 QALY). A Monte Carlo simulation revealed that this difference may be too marginal to detect an optimal decision (50.14 ± 8.28 QALY vs. 47.95 ± 2.12 QALY). Sensitivity analysis identified decision thresholds related to immunosuppression risks (P = 29% vs. P = 33% modeled), and a trend of increasing risk as a patient is more averse to losing life years. Conclusions: The marginally optimal treatment strategy currently is bilateral hand transplant, compared to prosthetics for pediatric patients. Key determinants of the future optimal strategy will be whether immunosuppressive regimens become safer, with a reduced risk of losing life years due to immunosuppressive complications, and whether prosthetics become more acceptable and enable higher functioning.

Pediatric Heart Transplantation: Transitioning to Adult Care (TRANSIT): Feasibility of a Pilot Randomized Controlled Trial.

BACKGROUND: Young-adult heart transplant recipients transferring to adult care are at risk for poor health outcomes. We conducted a pilot randomized controlled trial to determine the feasibility of and to test a transition intervention for young adults who underwent heart transplantation as children and then transferred to adult care. METHODS: Participants were randomized to the transition intervention (4 months long, focused on heart-transplant knowledge, self-care, self-advocacy, and social support) or usual care. Self-report questionnaires and medical records data were collected at baseline and 3 and 6 months after the initial adult clinic visit. Longitudinal analyses comparing outcomes over time were performed using generalized estimating equations and linear mixed models. RESULTS: Transfer to adult care was successful and feasible (ie, excellent participation rates). The average patient standard deviation of mean tacrolimus levels was similar over time in both study arms and < 2.5, indicating adequate adherence. There were no between-group or within-group differences in percentage of tacrolimus bioassays within target range (> 50%). Average overall adherence to treatment was similarly good in both groups. Rates of appointment keeping through 6 months after transfer declined over time in both groups. CONCLUSIONS: The feasibility of the study was demonstrated. Our transition intervention did not improve outcomes.

Pediatric Heart Transplantation: Transitioning to Adult Care (TRANSIT): Baseline Findings.

Young adult solid organ transplant recipients who transfer from pediatric to adult care experience poor outcomes related to decreased adherence to the medical regimen. Our pilot trial for young adults who had heart transplant (HT) who transfer to adult care tests an intervention focused on increasing HT knowledge, self-management and self-advocacy skills, and enhancing support, as compared to usual care. We report baseline findings between groups regarding (1) patient-level outcomes and (2) components of the intervention. From 3/14 to 9/16, 88 subjects enrolled and randomized to intervention (n = 43) or usual care (n = 45) at six pediatric HT centers. Patient self-report questionnaires and medical records data were collected at baseline, and 3 and 6 months after transfer. For this report, baseline findings (at enrollment and prior to transfer to adult care) were analyzed using Chi-square and t-tests. Level of significance was p < 0.05. Baseline demographics were similar in the intervention and usual care arms: age 21.3 ± 3.2 vs 21.5 ± 3.3 years and female 44% vs 49%, respectively. At baseline, there were no differences between intervention and usual care for use of tacrolimus (70 vs 62%); tacrolimus level (mean ± SD = 6.5 ± 2.3 ng/ml vs 5.6 ± 2.3 ng/ml); average of the within patient standard deviation of the baseline mean tacrolimus levels (1.6 vs 1.3); and adherence to the medical regimen [3.6 ± 0.4 vs 3.5 ± 0.5 (1 = hardly ever to 4 = all of the time)], respectively. At baseline, both groups had a modest amount of HT knowledge, were learning self-management and self-advocacy, and perceived they were adequately supported. Baseline findings indicate that transitioning HT recipients lack essential knowledge about HT and have incomplete self-management and self-advocacy skills.

18-month outcomes of heterologous bilateral hand transplantation in a child: a case report.

BACKGROUND: Although heterologous vascular composite allotransplantation has become a burgeoning treatment option for adult amputees, there have been no successful cases previously reported in children. Here, we describe the surgical, immunological, and neurorehabilitation details with functional outcomes 18 months after heterologous bilateral hand and forearm transplantation in an 8-year-old child with quadrimembral amputations and a previous kidney transplant. METHODS: 2 years of extensive preparation by medical and surgical teams preceded the hand-forearm transplantation of this child. The initial immunosuppressive protocol included thymoglobulin, tacrolimus, prednisone, and mycophenolate mofetil. In July, 2015, our vascularised composite allotransplantation team did the first bilateral hand and forearm transplantation in a child, an 8-year-old boy with previous living-related kidney transplantation. The surgery included four teams working simultaneously on the donor and recipient limbs, aided by customised cutting guides that aimed to reduce ischaemia time. Following an extended length of time in hospital, skin biopsies and close monitoring of renal function and drug concentrations occurred weekly for the first 3 months and were slowly tapered to monthly, and then quarterly. Skin biopsies were also done when tissue rejection was suspected. Paediatric-specific rehabilitation techniques were applied to promote patient engagement during rehabilitation. Progress was assessed by monthly sensory and motor function tests during routine clinic visits and with serial functional brain imaging studies, including structural brain MRI, magnetoencephalography and transcranial magnetic stimulation. FINDINGS: The surgery lasted 10 h and 40 min. Vascular revision of the ulnar artery was required a few hours postoperatively. There were no further immediate postsurgical complications. Rejection episodes occurred throughout the first year but were reversed. An increase in serum creatinine led to the addition of sirolimus at 3 months after transplantation with concomitant reduction in tacrolimus targets. Sensibility to light touch was present by 6 months after transplantation. Intrinsic hand muscle innervation was present by 7-10 months after transplantation. At 18 months, the child had exceeded his previous adapted abilities. As of 18 months after transplantation surgery he is able to write and feed, toilet, and dress himself more independently and efficiently than he could do before transplantation. He remains on four immunosuppressive medications and functional neuroimaging studies have shown motor and somatosensory cortical reorganisation. INTERPRETATION: Hand transplantation in a child can be surgically, medically, and functionally successful under carefully considered circumstances. Long-term data on the functional trajectory, neurological recovery, psychological sequelae, and the potential late effect of immunosuppression are still needed to support broader implementation of paediatric vascular composite allotransplantation. FUNDING: The Children's Hospital of Philadelphia.

An empirically based practice perspective on the transition to adulthood for solid organ transplant recipients.

Preparing patients for transitioning to self-managed care and subsequently transferring to the adult healthcare system has become a critical process for clinicians working with pediatric transplant recipients. This paper reviews several barriers to a successful transition. These include patient barriers, caregiver barriers, and considerations within pediatric and adult centers. To date, few approaches for improving the transition process have been empirically tested. This review details studies that have examined possible models including usage of a transition coordinator and transition clinics. Recommendations are offered to promote an optimal transition including the importance and content of preparation, assessing and addressing transition readiness, insuring the involvement of all stakeholders, and finally, at minimum providing services during the transfer period. Future directions are offered aiming to advance this important area of investigation.

Child and family adjustment following pediatric solid organ transplantation: factors to consider during the early years post-transplant.

Adjusting to life after transplant can be challenging to pediatric solid organ transplant recipients and their families. In this review, we discuss a number of important factors to consider during the first 2-3 yr after transplant (defined as the "early years"), including transitioning from hospital to home, returning to physical activity, feeding and nutrition, school reentry, potential cognitive effects of transplant, family functioning, and QOL. We highlight steps that providers can take to optimize child and family adjustment during this period.

Adolescent age and heart transplantation outcomes in myocarditis or congenital heart disease.

BACKGROUND: Adolescents often fare poorly after heart transplantation. However, whether the effect of age varies according to the etiology of heart failure is unknown. We tested the hypothesis that age-related heart transplantation outcomes are different in patients with myocarditis and congenital heart disease (CHD). METHODS: A retrospective analysis of the United Network of Organ Sharing database was performed for patients with myocarditis (n = 709) and CHD (n = 1,631) undergoing heart transplantation from 1987 to 2011. The effect of age on graft survival was assessed. Age was categorized as children (6-12 years), adolescents (13-18 years), younger adults (19-30 years), and older adults (31-50 years). RESULTS: For myocarditis, the median graft survival for adolescents was 6.9 years (95% confidence interval [CI], 5.6-9.6), which was significantly lower than other age groups (children: 14.1 [95% CI, 9.8-10.9] years, p = 0.004; younger adults: 11.8 [95% CI, 8.3-15.2] years, p = 0.172; older adults: 12.0 years [95% CI, 10.0-14.3 years], p = 0.033). For CHD, the median graft survival for adolescents was 7.4 years (95% CI, 6.8-8.6), which was not significantly different from other age groups (children: 9.0 [95% CI, 7.9-11.0] years, p = 0.737; younger adults: 11.2 [95% CI, 8.6-13.3] years, p = 0.744; older adults: 11.6 [95% CI, 9.2-15.3] years, p = 0.608). Multivariable analysis showed adolescent age was independently associated with worse graft survival for patients with myocarditis but not for CHD. CONCLUSIONS: Adolescents with myocarditis have significantly worse graft survival after heart transplantation, but adolescents with CHD have similar outcomes to other patients with CHD. Further study is needed to improve outcomes in this vulnerable population.

Best practices in the pediatric pretransplant psychosocial evaluation.

Assessment of psychosocial functioning is an often-included component of the pretransplant evaluation process. This study reviews several domains of assessment that have been related to post-transplant outcomes across solid organ transplant populations. These include evaluation of patient and family past adherence, knowledge about the transplantation process, and their neurocognitive, psychological, and family functioning. To date, few comprehensive pretransplant evaluation measures have been standardized for use with children; however, several assessment measures used to evaluate the aforementioned domains are reviewed throughout the study. Additionally, this article discusses some developmental, illness-specific, and cultural considerations in conducting the psychosocial evaluation. We also discuss ethical issues specific to the pediatric psychosocial evaluation. Recommendations are advanced to promote a comprehensive evaluation that identifies family strengths and risk factors as they begin the transplant journey.

Prevalence and correlates of posttraumatic stress and postpartum depression in parents of infants in the Neonatal Intensive Care Unit (NICU).

The purpose of this study was to assess the prevalence and correlates of acute stress disorder (ASD) and posttraumatic stress disorder (PTSD) in mothers and fathers, and postpartum depression (PPD) in mothers, of infants in the Neonatal Intensive Care Unit (NICU). 86 mothers and 41 fathers completed measures of ASD and of parent perception of infant medical severity 3-5 days after the infant's NICU admission (T1), and measures of PTSD and PPD 30 days later (T2). 35% of mothers and 24% of fathers met ASD diagnostic criteria at T1, and 15% of mothers and 8% of fathers met PTSD diagnostic criteria at T2. PTSD symptom severity was correlated with concurrent stressors and family history of anxiety and depression. Rates of ASD/PTSD in parents of hospitalized infants are consistent with rates in other acute illness and injury populations, suggesting relevance of traumatic stress in characterizing parent experience during and after the NICU.