Acceptability of an mHealth Family Self-management Intervention (myFAMI) for Pediatric Transplantation Families: Qualitative Focus.

BACKGROUND: Around 1800 pediatric transplantations were performed in 2021, which is approximately 5% of the annual rate of solid organ transplantations carried out in the United States. Effective family self-management in the transition from hospital to home-based recovery promotes successful outcomes of transplantation. The use of mHealth to deliver self-management interventions is a strategy that can be used to support family self-management for transplantation recipients and their families. OBJECTIVE: The study aims to evaluate the acceptability of an mHealth intervention (myFAMI) that combined use of a smartphone app with triggered nurse communication with family members of pediatric transplantation recipients. METHODS: This is a secondary analysis of qualitative data from family members who received the myFAMI intervention within a larger randomized controlled trial. Eligible participants used the app in the 30-day time frame after discharge and participated in a 30-day postdischarge telephone interview. Content analysis was used to generate themes. RESULTS: A total of 4 key themes were identified: (1) general acceptance, (2) positive interactions, (3) home management after hospital discharge, and (4) opportunities for improvement. CONCLUSIONS: Acceptability of the intervention was high. Family members rated the smartphone application as easy to use. myFAMI allowed the opportunity for families to feel connected to and engage with the medical team while in their home environment. Family members valued and appreciated ongoing support and education specifically in this first 30 days after their child's hospital discharge and many felt it contributed positively to the management of their child's medical needs at home. Family members provided recommendations for future refinement of the app and some suggested that a longer follow-up period would be beneficial. The development and refinement of mHealth care delivery strategies hold potential for improving outcomes for solid organ transplantation patients and their families and as a model to consider in other chronic illness populations. TRIAL REGISTRATION: ClinicalTrials.gov NCT03533049; https://clinicaltrials.gov/ct2/show/NCT03533049.

An mHealth App-Based Self-management Intervention for Family Members of Pediatric Transplant Recipients (myFAMI): Framework Design and Development Study.

BACKGROUND: Solid-organ transplantation is the treatment of choice for children with end-stage organ failure. Ongoing recovery and medical management at home after transplant are important for recovery and transition to daily life. Smartphones are widely used and hold the potential for aiding in the establishment of mobile health (mHealth) protocols. Health care providers, nurses, and computer scientists collaboratively designed and developed mHealth family self-management intervention (myFAMI), a smartphone-based intervention app to promote a family self-management intervention for pediatric transplant patients' families. OBJECTIVE: This paper presents outcomes of the design stages and development actions of the myFAMI app framework, along with key challenges, limitations, and strengths. METHODS: The myFAMI app framework is built upon a theory-based intervention for pediatric transplant patients, with aid from the action research (AR) methodology. Based on initially defined design motivation, the team of researchers collaboratively explored 4 research stages (research discussions, feedback and motivations, alpha testing, and deployment and release improvements) and developed features required for successful inauguration of the app in the real-world setting. RESULTS: Deriving from app users and their functionalities, the myFAMI app framework is built with 2 primary components: the web app (for nurses' and superadmin usage) and the smartphone app (for participant/family member usage). The web app stores survey responses and triggers alerts to nurses, when required, based on the family members' response. The smartphone app presents the notifications sent from the server to the participants and captures survey responses. Both the web app and the smartphone app were built upon industry-standard software development frameworks and demonstrate great performance when deployed and used by study participants. CONCLUSIONS: The paper summarizes a successful and efficient mHealth app-building process using a theory-based intervention in nursing and the AR methodology in computer science. Focusing on factors to improve efficiency enabled easy navigation of the app and collection of data. This work lays the foundation for researchers to carefully integrate necessary information (from the literature or experienced clinicians) to provide a robust and efficient solution and evaluate the acceptability, utility, and usability for similar studies in the future. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1002/nur.22010.

Essential components of transition to adult transplant services: the transplant coordinators' perspective.

CONTEXT: Medical and surgical advancements have resulted in improved long-term survival of pediatric liver transplant recipients. As pediatric patients approach school age and adolescence, transplant centers are challenged to facilitate the process of transitioning from pediatric to adult centers. OBJECTIVE: To describe pediatric and adult liver transplant coordinators' perspective regarding practice for transitioning patients to adult-oriented transplant centers. DESIGN: Descriptive SETTING: Pediatric and adult liver transplant coordinators associated with Studies of Pediatric Liver Transplantation. PARTICIPANTS: A total of 35 pediatric liver transplant coordinators and 24 adult liver transplant coordinators completed the survey. METHOD: Investigator-developed survey to identify current practice for transition process and actual transfer of a patient from pediatric to adult care. RESULTS: Transplant coordinators play an integral role in the transition process, and study results highlight what experienced coordinators believe are important considerations for a successful transition process. Results also highlight the importance of communication and partnership between the pediatric and adult programs.

Predictors of nonalcoholic steatohepatitis in obese children.

As the prevalence of childhood obesity increases, the incidence of nonalcoholic fatty liver disease and nonalcoholic steatohepatitis (NASH) also escalates. This study's purpose was to identify the clinical criteria to aid in determining when a liver biopsy is indicated for this growing population because currently no guidelines exist. We performed a retrospective chart review on all patients who were seen in the Nutrition Exercise and Weight Loss Kids™ Program at the Children's Hospital of Wisconsin from July 2003 through December 2004. We analyzed only individuals who underwent liver biopsy with the following criteria: (1) no evidence of other liver disease and (2) aspartate transaminase or alanine aminotransferase greater than 200 IU/L or any elevation of or for more than 6 months. Of the 284 patients reviewed, only eight patients (3%) met the criteria for analysis. Biopsy results demonstrated that 100% had histological evidence of NASH with steatosis, and seven of the eight (87.5%) had NASH with fibrosis, cirrhosis, or both. Obese children with an aspartate transaminase or alanine aminotransferase greater than 200 IU/L or any elevation of aspartate transaminase or alanine aminotransferase for more than 6 months, have a strong likelihood of having NASH with or without fibrosis, cirrhosis, or both.