Introduction: To improve access to care and engage adolescent transplant recipients for adherence-promoting interventions, innovative solutions utilizing technology are needed. Materials and Methods: This study describes the implementation of a five-session group intervention targeting medication adherence in adolescent transplant recipients through home-based telemedicine. Results: Seven videoconferencing groups were conducted with a total of 33 participants living a median of 57 miles away from their transplant medical center. The median coefficient of variation (CV) of tacrolimus (immunosuppression medication) decreased from 32.2% to 23.5% from the pregroup to postgroup phase. Analyses indicated that the group was acceptable and engaging for participants, as highlighted by one participant reporting, ''I liked how me and the group members came together. it felt like a little family.'' Overall satisfaction with the group and with the technology was endorsed by 86%. The group intervention was generally feasible; however, there were technological difficulties reported by participants and the facilitator, particularly given the diversity of the home-based connections and equipment. Other adaptations helped improve recruitment, attendance, and participation. Discussion: Implementing a telehealth group can pose unique challenges, especially with a group of adolescent participants. Although nonsignificant, we observed a decrease in the median CV of tacrolimus, indicating that medication adherence generally improved after group intervention. Our experience facilitating these groups provides insights into strategies to optimize feasibility and the participant experience. Distance of participants from the hospital is an important consideration and provides a strong rationale for the need for telemedicine-enabled approaches. We explore and discuss the challenges to implementing a home-based group, suggest practical strategies and developmentally sensitive adjustments when working with adolescents, and propose strategies to prepare clinicians for obstacles that may present when implementing a telehealth group with youth.

Detection of hepatocellular carcinoma (HCC) through screening can improve outcomes. However, HCC surveillance remains costly, cumbersome and suboptimal. We tested whether and how serum Alpha-Fetoprotein (AFP) should be used in HCC surveillance. Record linkage, dedicated pathways for management and AFP data-storage identified i) consecutive highly characterised cases of HCC diagnosed in 2009–14 and ii) a cohort of ongoing HCC-free patients undergoing regular HCC surveillance from 2009. These two well-defined Scottish patient cohorts enabled us to test the utility of AFP surveillance. Of 304 cases of HCC diagnosed over 6 years, 42% (129) were identified by a dedicated HCC surveillance programme. Of these 129, 47% (61) had a detectable lesion first identified by screening ultrasound (US) but 38% (49) were prompted by elevated AFP. Despite pre-HCC diagnosis AFP >20kU/L being associated with poor outcome, ‘AFP-detected’ tumours were offered potentially curative management as frequently as ‘US-detected’ HCCs; and had comparable survival. Linearity of serial log10-transformed AFPs in HCC cases and in the screening ‘HCC-free’ cohort (n = 1509) provided indicators of high-risk AFP behaviour in HCC cases. An algorithm was devised in static mode, then tested dynamically. A case/control series in hepatitis C related disease demonstrated highly significant detection (p<1.72*10−5) of patients at high risk of developing HCC. These data support the use of AFP in HCC surveillance. We show proof-of-principle that an automated and further refine-able algorithmic interpretation of AFP can identify patients at higher risk of HCC. This approach could provide a cost-effective, user-friendly and much needed addition to US surveillance.

The aim of this study was to assess healthcare provider perspectives on barriers to medication adherence and to discover recommendations for interventions among providers of pediatric solid-organ transplant patients. An anonymous online survey was administered to a multidisciplinary pool of pediatric transplant providers from February 2015 to March 2016. It consisted of 15 questions regarding transplant providers' attitudes, clinical practice, and beliefs pertaining to medication adherence among teenage solid-organ transplant recipients. Data were analyzed using descriptive statistics. Responses to open-ended questions were coded and categorized into themes. One hundred ten surveys were completed by providers specializing in pediatric heart, kidney, liver, lung, and/or intestinal transplantation. Commonly cited reasons for poor adherence were forgetting/poor planning (94%), the desire to be normal (86%), lack of support (86%), and poor parental monitoring (79%). Suggestions to improve adherence included increasing peer and family support, providing education, and incorporating technology into adherence regimens. Barriers to adherence in transplant patients are recognized by providers and are both similar to and disparate from patient and family identified barriers published in the literature. Providers recognize the importance of education, social support, and technologically driven interventions on improving outcomes in the transplant population.

Background Children with single ventricle (SV) heart disease who undergo Fontan operation are at risk for developing multiorgan dysfunction. Although survival has improved, significant comorbidities involving multiple organ systems may develop, requiring evaluation and management by many subspecialists. Using data from an internal survey, we documented high care variability for our Fontan population. We then developed a multidisciplinary clinic, designed and implemented a clinical care pathway to decrease variability of patient assessment. Methods After creating a multidisciplinary team and a clinical care pathway, we initiated a multidisciplinary clinic (MDC) where patients could see multiple subspecialists during a single encounter. We then monitored our effectiveness by retrospective chart review to determine care pathway adherence (process measure) and incidence of new diagnoses of end‐organ injury (outcome measure) as well interventions implemented. Adherence was analyzed using statistical process control (SPC) charts. Results Eighty‐six patients were seen in the MDC from January 2016 to September 2017. The proportion of patients with appropriate testing increased, related to strong care pathway adherence. A significant amount of novel pathology was diagnosed in all evaluated organ systems, both Fontan‐associated comorbidities and general pediatric diagnoses. Subsequent interventions included cardiac catheterization n = 21 (31%) with more than half of these patients undergoing intervention n = 17 (20%), and liver biopsy n = 9 (10%). Additionally, 58 patients (67%) were referred to a neuropsychologist based on perceived clinical need, with n = 34 (40%) undergoing a neuropsychological evaluation. Conclusions Children who have undergone Fontan palliation are at risk for developing cardiac and noncardiac comorbidities. Use and adherence to an institutional care pathway resulted in the diagnosis of significant novel pathology and subsequently provided opportunity for intervention.

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