Life After Liver Transplant: Long-Term Care
Updated: Sep 8
Starzl Network · Jan 18, 2021
At every point in this journey toward, through, and for a lifetime after transplant, myriad decisions must be made about medical care—always aiming to balance the risks and benefits accompanying transplant to achieve the best possible long-term outcomes. Ideally, families, children, and transplant providers are lifelong partners in these care decisions, working together from a patient’s earliest transplant experiences through adulthood.
PARTNER seeks to build on the established bonds between providers and patient partners, using the infrastructure and partnerships of the Starzl Network for Excellence in Pediatric Transplantation (SNEPT) and Transplant Families (TF) to expand from these personal relationships into organizational partnerships with shared priorities, knowledge, and a sustainable capacity to do collaborative patient-centered outcomes research (PCOR).
The project’s long-term goal is sustainable, equitable health and wellness for pediatric transplant patients and their families. PARTNER aims to expand engagement and build sustainable expertise and supportive infrastructure for PCOR and comparative effectiveness (CER) research into SNEPT. Thus, PARTNER seeks to:
Engage diverse pediatric transplant families, providers, and other stakeholders as PCOR partners. The project team wants to foster productive, sustainable relationships and a shared understanding of patient- and community-engaged partnerships, key patient-centered outcomes (PCOs), and research priorities.
Develop (a) knowledge and skills in SNEPT/TF participants and (b) infrastructure in SNEPT/TF to support collaborative development and conduct of future PCOR and CER.
Co-create a PCOR roadmap, including projects to address priority areas, key patient-centered/reported outcomes, and infrastructure for PCOR (shared leadership, recruitment, data collection, study design).
The project will use a cyclical design to progressively develop PCOR skills within SNEPT/TF while continuously eliciting input from the transplant community. The PCORI-funded ASPIRE (Accelerating Systematic Stakeholder, Patient, and Institution Research Engagement) group will mentor PARTNER during the design/lead activities and evaluate their engagement, adoption, and implementation. Each cycle has:
Education Module: Adapted from ASPIRE and PCORI’s Research Fundamentals training and delivered as a 10- to 20-minute interactive lesson through a digital health platform (RealTime Clinic, RTC).
Survey (on RTC): To elicit feedback on how content should be applied in SNEPT/TF PCOR.
Survey Analysis: Survey data will be summarized and reviewed and used to shape the focus group discussion guide for the next cycle.
Focus Group: For each module/survey, stakeholders will be asked to participate in a focus group for a more in-depth discussion. Discussion among focus groups will be used to refine existing categories, identify sub-themes within categories, and map relationships between themes.
Iterative Feedback: For each cycle, all pertinent findings will be summarized and disseminated to the broader participants for review and additional comment. Survey and focus group feedback will be used to draft and refine successive sections of the PARTNER PCOR Roadmap—a document outlining principles and processes for PCOR within SNEPT. The PCOR Roadmap will include guidelines for shared leadership, productive partnerships, stakeholder roles and expectations, project design, and proposed study outcomes. It will also include initial project prioritization and research question development.
Projected Outcomes and Outputs:
PARTNER will prepare the pediatric liver transplant community to extend SNEPT’s reach to PCOR/CER and to prioritize the patient-centered outcomes and interventions most meaningful and impactful for children who have received transplants and their families. The project aims to build engagement, sustainable expertise, and supportive infrastructure for PCOR/CER into SNEPT, with learning that can be disseminated to all TF’s partners. These efforts will be to ingrain critical skills, identify shared priorities, and develop feasible, sustainable plans for authentic PCOR in SNEPT.
Patient and Stakeholder Engagement Plan: Key stakeholders, including patients and family advocates, will be embedded and lead participation in every facet of PARTNER, including planning, design, implementation, interpretation, and dissemination. To maximize reach, the project will continue to use digital tools and virtual focus groups.
Project Collaborators: The Starzl Network for Excellence in Pediatric Transplantation (SNEPT), Transplant Families (TF), Accelerating Systematic Stakeholder, Patient, and Institution Research Engagement (ASPIRE), RealTime Clinic (RTC), Special Populations Health Equity Research and Education (SPHERE) Committee.
We are thrilled to work with RealTime Clinic to provide electronic app-based surveys to our parents and healthcare partners. Nehal Swami, CEO of RealTime Clinic, had this to say about the idea,
“At RealTime Clinic, our moonshot is to eliminate preventable organ transplant rejection. We also fully believe increased engagement between the care team and the family will improve adherence to the treatment regimen.”
About Starzl Network
The Starzl Network’s mission is to unite big data, technology, patient advocacy, and transplant thought leaders to deliver the best possible care and develop new, scalable solutions to pediatric transplantation’s most challenging problems. For more information, please visit starzlnetwork.org.