The transition from parent-controlled care to self-managed care represents an important challenge for adolescents with chronic conditions. We sought to gain a deeper understanding of the factors influencing the internalization of motivation to self-care in adolescent liver transplant recipients. We conducted a qualitative study using in-depth interviews with 18 young patients. We triangulated the data collected from the patients with data from parents and health care providers, and used an inductive approach to analyze the data. Our results illustrate three interrelated challenges that impact on young patients’ motivation to self-care: (a) the cognitive challenge of fully understanding one’s condition and personal health risks; (b) the behavioral challenge of developing independence regarding self-management issues; and (c) the psychological challenge of building a sense of self-ownership and purpose. The latter involves overcoming the trauma of survival and coming to terms with feelings of obligation, two challenges inherent to transplantation that warrant further investigation.

Background: Maternal fetal cellular trafficking, known as maternal microchimerism, is reported to be increased in patients with biliary atresia (BA). Accordingly, we hypothesized that maternal grafts may be better tolerated in liver transplant recipients with BA, due to greater exposure to non-inherited maternal antigens in BA patients during the fetal period. Patients and methods: We retrospectively collected data from 205 parental living donor liver transplanted children between 1993 and 2012, with a median age of 1.04 years (0.3 to 14.2) and a tacrolimus based immunosuppression. Primary disease, donor gender, donor-to-recipient sex combination, recipient age, immunosuppression regimen (steroids, anti CD25 induction, antimetabolites) were tested as risk factors for acute cellular rejection (ACR) in univariate (Log rank) and multivariate (Cox regression) analyses, in both BA and non-BA patients. Results: The overall 1-year patient, death-censored graft, and ACR free survival were 96.6%, 98.5% and 49.4%, respectively. Results for univariate and multivariate analysis in BA and non-BA patients are reported in Table 1. Maternal donation was finally the only significant factor that reduced the risk of ACR in BA patients. The other covariates tested had no significant impact on ACR free survival in BA and non BA patients. Conclusions: Our results strongly suggest a beneficial impact of maternal living donation on liver graft acceptance in BA recipients. Further longitudinal studies assessing maternal microchimerism in BA and non-BA liver transplant recipients are warranted. Moreover, we might speculate that tolerance induction protocols aiming at increasing donor/recipient chimerism might be efficient in transplanted infants. - i.e.Table: No Caption available.

The transition from parent-controlled care to self-managed care represents an important challenge for adolescents with chronic conditions. We sought to gain a deeper understanding of the factors influencing the internalization of motivation to self-care in adolescent liver transplant recipients. We conducted a qualitative study using in-depth interviews with 18 young patients. We triangulated the data collected from the patients with data from parents and health care providers, and used an inductive approach to analyze the data. Our results illustrate three interrelated challenges that impact on young patients’ motivation to self-care: (a) the cognitive challenge of fully understanding one’s condition and personal health risks; (b) the behavioral challenge of developing independence regarding self-management issues; and (c) the psychological challenge of building a sense of self-ownership and purpose. The latter involves overcoming the trauma of survival and coming to terms with feelings of obligation, two challenges inherent to transplantation that warrant further investigation.

p T , under mono‐ and infratherapeutic calcineurin inhibition, may constitute an optimal condition combining graft acceptance with low IS load and minimal IS ‐related toxicity. We reviewed 171 pediatric (<15.0 yr) survivors beyond one yr after LT , transplanted between April 1999 and June 2007 under tacrolimus‐based regimens (median follow‐up post‐ LT : 6.0 yr, range: 0.8–9.5 yr). Their current status regarding IS therapy was analyzed and correlated with initial immunoprophylaxis. p T was defined as tacrolimus monotherapy, with mean trough blood levels <4 ng/mL during the preceding year of follow‐up, combined with normal liver function tests. The 66 children transplanted before April 2001 received a standard tacrolimus–steroid regimen. Beyond April 2001, 105 patients received steroid‐free tacrolimus–basiliximab or tacrolimus–daclizumab immunoprophylaxis. In the latter group, 43 (41%) never experienced any acute rejection episode and never received steroids. In the long term, a total of 79 recipients (47%) developed p T (n = 73) or IS ‐free operational tolerance (n = 6), 27 of them belonging to the 43 steroid‐free patients (63%). In contrast, only 52/128 (41%) children treated with steroids subsequently developed prope/operational tolerance (p = 0.012). Steroid‐free tacrolimus‐based IS seems to promote long‐term graft acceptance under minimal/no IS . These results constitute the first evidence that minimization of IS , including steroid avoidance, might be tolerogenic in the long term after pediatric LT .

Introduction: As they transition from parentally controlled care to self-managed care, and from paediatric care to adult care, chronically ill adolescents are facing many challenges, one of them being to find their own ways of fitting their medication intake schedule into their daily liferoutines. The complexity and frequency of medication regimens is a well-documented risk factor of non-adherence in patients with a chronic disease. We hypothesized that a possible benefit of the conversion from a twice-daily formulation of tacrolimus (Prograf®) to once daily prolonged release tacrolimus (Advagraf®) in adolescent transplant patients might be a decrease of non-intentional non-adherence due to forgetfulness. The aim of our study was to assess the subjective experience of such change, including the impact on adherence to treatment. Methods: As a prerequisite to our study, the medical safety of such switch was assessed in 32 patients. At 8-week post-switch, a sub-sample of 11 patients underwent a semi-directed interview by an independent researcher, to assess the subjective impact of the switch. Results: The results of our study illustrate that the switch improved the young patients' self-efficacy and self-determination regarding self-managed care. The relevance of our hypothesis that a simplified regimen might be associated with increased adherence in this population is confirmed. Conclusions: We discuss strategies to support self-management and enhance adherence during the healthcare transition process of adolescents toward adult-oriented care.

Introduction: Biliary complications (BC) still remains the ‘Achilles heel’ of pediatric liver transplantation (LT). The aim of the study was to describe the incidence of BC and analyze the impact of surgical treatment of BC on long-term patient and graft survival. Methods: We retrospectively reviewed 429 primary LT performed at St. Luc University Clinics, Brussels, Belgium, between 01-07-1993 and 01-12-2010. The median recipient age at LT was 1.6 years (range: 0.2 - 17.5). The main indications for LT were primary biliary atresia (58%) and progressive familial intra-hepatic cholestasis (8%). 21 (n=88) recipients received a whole liver graft. The incidence of technical variant techniques namely reduced liver, split liver and live-donor was 21% (n=91), 11% (n=47) and 73% (n=203), respectively. The median follow-up was 7.6 years (range: 6 mo - 17.6 yrs). Results: The overall 1, 5, and 10-year patient and graft survival rates were 98%, 95% and 94%, and 97%, 94% and 92%, respectively. At 5 years, the overall incidence of BC was 23% (n=98). 60 of them were anastomotic complications (47 (78%) strictures and 13 (22%) fistulae), all of them, except one, primarily surgically treated. Surgical treatment of biliary anastomotic strictures consisted in resection of the stenotic bile duct tissue followed by a reconstruction of the biliary anastomosis. The type of the graft was not found as an independent risk factor for the development of BC. At multivariate analysis, only acute rejection and hepatic artery thrombosis increased the risk of BC (Odds ratio 1.76 (1.06 - 2.92);p=0.03 and Odds ratio 3.07 (1.18 - 8.05);p=0.02, respectively). The success rate of the surgically treated BC (defined as the normalization of liver enzymes, the disappearance of dilated bile ducts on ultrasound, absence of repeated biliary surgery and the absence of impact on graft and patient survival) was 80% (n=48). The 1, 5 and 10-year patient and graft survival rates of surgically treated BC were comparable with recipients without BC (p=0.553 and p=0.398, respectively). Conclusion: Despite the excellent outcome of pediatric LT, BC still represent a major source of morbidity, the majority being anastomotic complications. Our results suggest that surgical management of anastomotic BC may constitute the best and the first therapeutic option in terms of subsequent patient/graft survival. The respective role of surgery and interventional radiology for recurrent biliary anastomotic strictures requires further analysis.

Introduction: Biliary atresia (BA) constitutes the main indication for pediatric liver transplantation (LT) (60% at our institution). In this work, we studied long term results, as well as the impact of the learning curve and of living donation (LD) LT on outcomes. The clinical, biochemical and histological status in patients who reached the 20 year follow-up visit were also analyzed. Methods: Data from a total of 476 children (median age: 1.33 years, range: 0.2-15.7) transplanted for BA at St-Luc Hospital (Brussels, Belgium) between May 1984 and April 2012 were reviewed. Three time intervals were studied: 1984-1992, 1993 (introduction of LD)-2002 and 2003-2012. Results: The overall patient survival (PS) at 10 and 20 years were 86% and 83%, respectively; the corresponding values for graft survival (GS) were 78% and 73%. A strong learning curve effect was identified: 5 year PS were 76% for the children transplanted in 1984-1992 period, versus 92% in 1993-2002, versus 98% in 2003-2012 (p< 0.001). For patients transplanted from 1993 (n=279), better outcomes were observed after LD (n=150) when compared to cadaveric donation (CD) (n=129): 10 year PS were 97% after LD, versus 90% after CD (p< 0.05); the corresponding figures for GS were 94% versus 83% (p=0.001). In the subgroup of children transplanted below 2 years of age, PS was 97% for LD, versus 87% for CD (p< 0.01). In contrast, in children transplanted beyond 2 years of age, the advantage of LD could not be observed anymore (PS: 95% for LD versus 96% for CD, NS). For the patients reaching the 10 year post transplantation interval, the subsequent 10 year PS and GS reached 97% and 93%, respectively. Forty-four patients transplanted before 1992 and with available follow-up had a control visit at 20 year post-transplantation. At this time, 10 of them had been retransplanted, 98% were still under immunosuppression (67% under a calcineurin inhibitor monotherapy), 88% had normal liver enzymes, but 7/18 of the available biopsies displayed significant fibrosis. Concerning the nephrological status, 18% of patients were treated for hypertension, 9% had a GFR < 60ml/min/1m73 and one single patient had a functional kidney transplant. Conclusion: This work suggests that the outcome of children transplanted for BA before 2 years of age is significantly better with LD than CD. Moreover, most of the children transplanted nowadays for BA will become long term survivors. Despite these encouraging results, attention has to be paid to the nephrological status of these patients submitted throughout their lives to nephrotoxic drugs, as well as to their histological follow-up, with particular respect to fibrosis.

To optimize self-management and adherence in adolescent patients, HCPs need to discuss not only medical and treatment-related issues, but also general health and psychosocial concerns. Our study aimed to explore how the members of the paediatric team in our programme understand NA in adolescents, and how they define their own role regarding self-management education. We used a sequential mixed methods design and conducted a qualitative observational and in-depth interview study (n=22) and a quantitative descriptive study through self-administered questionnaires (n=31). Our results show a discrepancy between the HCPs' understanding of the complex psychosocial factors impacting on long-term adherence, and their current limited practice of patient education. A number of uncertainties were found to explain the HCPs' perceived difficulty to engage in comprehensive patient education activities: uncertainty regarding (i) the health status of transplant recipients; (ii) a shared operational definition of adherence and the cause of organ rejection in some cases; (iii) the extent to which adherence is a shared responsibility which involves the HCPs as patient educators; (iv) the long-term impact of a LRD. To avoid the risk of conveying incongruent messages, multidisciplinary health care teams need to explicitly acknowledge and discuss the various areas of uncertainty, some of which are inherent to transplantation.