Debra S. Lefkowitz

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.

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.

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 Childrens Hospital of Philadelphia.

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.

Mobile health technology for adolescent transplant recipients: What's h'app'ening in adherence promotion?

Non-adherence is a well-documented problem in patients with chronic illnesses, with known significant morbidity and mortality in post-transplant populations. Evidence suggests that nonadherence (and subsequent complications, such as graft loss) is even more prevalent among adolescents (1). At present, there are no empirically validated treatments to improve adherence in adolescent transplant recipients (2). One of the newer areas of research in improving adherence is the use of mobile health (mHealth) technologies, which use a mobile device, such as a cellular phone. The appeal of such an intervention is clear: teenagers love their cell phones. In a 2010 Pew Center report (3), 75% of adolescents send text messages, with older adolescents sending upwards of 100 text messages per day, and spending greater than 90 minutes a day texting. As a result, there has been a proliferation in recent years of research investigating the use of text interventions to promote adherence behavior – for example, a smartphone application (or “app”) that sends an automatic text reminder to the adolescent reminding him or her to take medication at a specified time. In a 2013 review of 160 commercially available adherence apps, 89.6% of them generated reminders to take medication and 29.4% tracked missing doses (4). Benefits of mHealth apps identified in the literature include their feasibility, cultural acceptability, and high rates of participant satisfaction. Importantly, it appears that at least in the short term, there are desired gains in adherence: In a meta-analysis of 29 studies, 18 of those yielded significant short-term improvements in medication adherence (5). Factors related to improvement included if the study was personalized (e.g., used the individual’s name in the message) and if it was tailored to participant needs. Despite the mass appeal and potential short-term improved adherence demonstrated by many of these interventions, research in this area is still in its infancy, and as such, it is unknown whether these interventions maintain behavior change long term. Associated risks and costs have also not yet been well delineated (3, 5, 6). Furthermore, most research in the use of text-messaging interventions lack a theoretical model to guide intervention development (7), which can limit interpretation and generalizability of findings. Issues of privacy and legal and liability issues related to the use of mHealth technology are also important to consider (8). In this issue, Shellmer et al. (9) report preliminary results outlining the development and fieldtesting of a mobile health app (Teen Pocket PATH [TPP]) aimed at improving medication adherence among youth (age 11–18) who had undergone liver, heart, or lung transplantation. In this study, authors describe the development of the prototype, as well as follow-up assessment of the usability of the app. Results of this study, which included both qualitative and quantitative data, found TPP to be user-friendly, and helpful in improving adherence to a medication regimen as well as in increasing communication among parents and adolescents about medical care. This study has multiple strengths. First and foremost, the authors utilize a user-centered design approach, which incorporated multiple levels of participant feedback at various points of development. Doing so helps to ensure that the technology and design meet the needs of the target population. Second, TPP differentiated itself from the many other available apps by including an adjunctive parent component, allowing parental oversight of adolescent adherence. This function may be a useful “safety net” for adolescents who dismiss the app’s reminders. Likewise, it may also facilitate a scaffolded care transition process, allowing for increased adolescent

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.

The transplant journey: psychosocial aspects of the different stages of the transplantation process.

Recently there has been a marked increase in the number of articles addressing psychosocial aspects of pediatric transplantation, and this is also evident in this journal. Indeed, three of the eight most frequently cited Pediatric Transplantation articles published in 2010–2011 and cited in 2012 focused on adherence, transition and health-related quality of life. In the current issue, we publish the first in a series of seven review articles focusing on psychosocial aspects of the different stages of the transplant process, from time of referral, through the transplant itself and the years afterward, to re-transplantation and/or end of life care. The impact of various domains of psychosocial functioning on patient morbidity and mortality is now recognized within both pediatric and adult transplantation (1, 2), and there has been an increasing focus on the development of evidence-based interventions to ameliorate modifiable psychosocial risk factors. Traditionally, the majority of publications describing psychological or social factors associated with pediatric transplantation have focused on specific topics (e.g., factors influencing adherence, cognitive functioning after transplant) and/ or specific subsets of patients, such as kidney transplant patients. Our goals with this series of articles are threefold: (i) To provide a review of pertinent psychosocial topics, with considerations across all solid organ populations and age groups, (ii) to bring the various topics together in a consistent, unified format, akin to a “journey,” and (iii) to discuss best practices, providing recommendations for clinical care and policy. Why think of transplant as a “journey?” While the transplant surgery itself is a discrete event in time, the transplant course encompasses a variety of different stages prior to, during, and after transplant, each with its attendant critical psychosocial considerations. It is therefore not just about a series of isolated events, but rather is a fluid and dynamic process whereby previous experiences and outcomes are linked to, and can influence, present and future experiences and outcomes. Conceptualizing the process as a journey allows for a better understanding of different issues at different stages in the process, and also clarifies the linkages between these different stages. Furthermore, it importantly highlights developmental factors that are sometimes omitted from the literature. The transplant journey itself is a developmental process; there are various stages to be lived through and experienced, but the young person receiving the transplanted organ continues to grow and develop as well. It is this individual developmental process that often poses the challenges for patients, families, and clinicians when it has to be considered alongside the stage of the patient in the transplant journey. The first article in the series is entitled “The start of the transplant journey: Referral for pediatric solid organ transplantation (3).” In this article, Shellmer, Brosig, and Wray discuss the impact of referral for transplant evaluation on the pediatric patient and family. In doing so, they explore patient and family expectations (and misconceptions) about the transplant process, acquisition of transplant knowledge, and how these influence their decision making. While a child’s and family’s introduction to transplantation is often considered to begin with their arrival at the transplant center, for many, their journey will start well before that when transplantation is first considered as a possible treatment option. For some families, this can be at the diagnosis of congenital disease, where they may have the complexity and uncertainty associated with the condition explained and may be told that transplantation is in their child’s future. Despite the importance of understanding what brings a child and family