Health Care Transition for Adolescents and Young Adults With Pediatric-Onset Liver Disease and Transplantation
BARRIERS TO TRANSITION OF CARE
- Barriers to transition are multifaceted and include individual, family, and system-wide factors.
- Transition planning should be initiated by the pediatric team in early adolescence.
- Pediatric hepatology and transplant recipients should have access to a mental health specialist with expertise in adolescents with chronic illness.
- Barriers to HCT are best overcome by a multidisciplinary, standardized approach to transition planning with an emphasis on partnership and collaborative practice between pediatric and adult providers.
RECOMMENDED APPROACH TO TRANSITION OF CARE
- A structured transition program is associated with improved health outcomes, patient experience, and utilization of health care.
- The Six Core Elements of Health Care Transition™ are applicable to AYA with CLD as well as LT recipients and should be utilized to establish a HCT program.
- An adaptation of the Six Core Elements pertaining to AYA with pediatric-onset liver disease and transplantation is summarized in Table 2.
- Regular assessment of transition readiness utilizing TRA tools is an essential component of transition planning.
TRANSITION CLINIC IMPLEMENTATION
- Recommended topics for HCT educational sessions are summarized in Table 3.
- HCT requires a coordinated, multidisciplinary team comprised of hepatologists, advanced practice providers, surgeons, pharmacists, nutritionists, social workers, nurses, psychologists, and psychiatrists from both the pediatric and adult teams.
- HCT is a time and resource-intensive undertaking that lacks the recognition, support and reimbursement necessary for program development and outcomes assessment.
- Widespread implementation of comprehensive HCT programs will require the endorsement and support from governing organizations such as NASPGHAN and AST.
CONTINUATION OF HCT FOLLOWING TRANSFER: THE ROLE OF THE ADULT PROVIDER
- The transition process does not conclude at the time of transfer.
- Transfer of care is one component of HCT which will need to be continued by the adult team throughout young adulthood.
- Adult transplant and hepatology centers should utilize The Six Core Elements of Health Care Transition™ to develop interventions to continue the transition process in the adult practice.
- Adult providers should complete a self-care skills assessment at the initial visit and periodically thereafter (Table 4).
- HCT in the adult practice should be a multidisciplinary effort with a holistic approach to patient care focusing not only on disease processes but also on psychosocial and behavioral aspects of care.
OUTCOMES MEASURES
- Outcome assessments should include important measures such as adherence, health care costs, and HRQOL in addition to patient and graft survival.
- Medication Level Variability Index can be used as a validated marker of nonadherence.
- Validated HRQOL instruments should be incorporated into standardized longitudinal surveillance and follow-up care of pediatric LT recipients to amplify the patient and parent voice.
- A comprehensive transition care model focused on AYA with complex care needs may serve to reduce total costs and acute care utilization among pediatric patients with CLD or LT.
ADDITIONAL CONSIDERATIONS
- Clinical outcomes following transfer of care are contingent upon the relationship between pediatric and adult providers.
- Adult providers must appreciate the need to continue transition efforts throughout young adulthood.
- Multidisciplinary HCT programs must become the standard of care for all pediatric CLD and LT patients both before and after transfer.
Recommendation Grading
Overview
Title
Health Care Transition for Adolescents and Young Adults With Pediatric-Onset Liver Disease and Transplantation
Authoring Organization
North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition
Publication Month/Year
January 12, 2023
Last Updated Month/Year
April 1, 2024
Supplemental Implementation Tools
Document Type
Consensus
Country of Publication
US
Document Objectives
Advances in medical therapies and liver transplantation have resulted in a greater number of pediatric patients reaching young adulthood. However, there is an increased risk for medical complications and morbidity surrounding transfer from pediatric to adult hepatology and transplant services. Health care transition (HCT) is the process of moving from a child/family-centered model of care to an adult or patient-centered model of health care. Successful HCT requires a partnership between pediatric and adult providers across all disciplines resulting in a transition process that does not end at the time of transfer but continues throughout early adulthood. Joint consensus guidelines in collaboration with the American Society of Transplantation are presented to facilitate the adoption of a structured, multidisciplinary approach to transition planning utilizing The Six Core Elements of Health Care TransitionTM for use by both pediatric and adult specialists. This paper provides guidance and seeks support for the implementation of an HCT program which spans across both pediatric and adult hepatology and transplant centers.
Inclusion Criteria
Male, Female, Adolescent, Adult
Health Care Settings
Ambulatory
Intended Users
Nurse, nurse practitioner, physician, physician assistant
Scope
Management
Diseases/Conditions (MeSH)
D008107 - Liver Diseases
Keywords
pediatric liver disease
Source Citation
Vittorio J, Kosmach-Park B, King LY, Fischer R, Fredericks EM, Ng VL, Narang A, Rasmussen S, Bucuvalas J. Health Care Transition for Adolescents and Young Adults With Pediatric-Onset Liver Disease and Transplantation: A Position Paper by the North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition. J Pediatr Gastroenterol Nutr. 2023 Jan 1;76(1):84-101. doi: 10.1097/MPG.0000000000003560. Epub 2022 Jul 13. PMID: 35830731.