ORIGINAL ARTICLE
The Crucial Role of Empowerment in Engaging Adolescents and Young Adults for Independence: Essential Strategies and Skills for a Successful Transition
Jennifer Vittorio,
Beverly Kosmach-Park,
Lindsay King,
Corresponding Author
Jennifer Vittorio
New York University (NYU) Transplant Institute, NYU Langone Health, New York, New York, USA
Correspondence:
Jennifer Vittorio ([email protected])
Search for more papers by this authorBeverly Kosmach-Park
Department of Transplant Surgery, UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA
Search for more papers by this authorLindsay King
Division of Gastroenterology, Duke University Health System, Durham, North Carolina, USA
Search for more papers by this authorJennifer Vittorio,
Beverly Kosmach-Park,
Lindsay King,
Corresponding Author
Jennifer Vittorio
New York University (NYU) Transplant Institute, NYU Langone Health, New York, New York, USA
Correspondence:
Jennifer Vittorio ([email protected])
Search for more papers by this authorBeverly Kosmach-Park
Department of Transplant Surgery, UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA
Search for more papers by this authorLindsay King
Division of Gastroenterology, Duke University Health System, Durham, North Carolina, USA
Search for more papers by this authorFunding: The author(s) received no specific funding for this work.
ABSTRACT
Background
An increasing number of pediatric solid organ transplant (SOT) recipients are surviving into adolescence and young adulthood. The transition from pediatric to adult-oriented care occurs during a unique and vulnerable period.
Methods
Presented here is a structured approach to healthcare transition (HCT) for adolescent and young adult SOT recipients aimed at optimizing independence in order to assist young patients with adherence, self-management, and improved quality of life.
Results
Close attention must be paid to neurocognitive development, mental well-being, and social determinants of health.
Conclusions
These efforts require a multidisciplinary team approach as well as collaboration between pediatric and adult providers in order to achieve these goals and patient longevity.
Conflicts of Interest
Jennifer Vittorio is a consultant for Mirum Pharma. Beverly Kosmach-Park and Lindsay King have no conflicts of interest to disclose.
Open Research
Data Availability Statement
Data sharing is not applicable to this article as no datasets were generated or analyzed during the current study.
References
- 1S. Chandra, S. Luetkemeyer, R. Romero, et al., “Growing Up: Not an Easy Transition-Perspectives of Patients and Parents Regarding Transfer From a Pediatric Liver Transplant Center to Adult Care,” International Journal of Hepatology 2015 (2015): 765957.
- 2E. M. Fredericks, D. Dore-Stites, A. Well, et al., “Assessment of Transition Readiness Skills and Adherence in Pediatric Liver Transplant Recipients,” Pediatric Transplantation 14, no. 8 (2010): 944–953.
- 3Z. E. Lawrence, M. Martinez, S. Lobritto, et al., “Adherence, Medical Outcomes, and Health Care Costs in Adolescents/Young Adults Following Pediatric Liver Transplantation,” Journal of Pediatric Gastroenterology and Nutrition 70, no. 2 (2020): 183–189.
- 4W. C. Cooley and P. J. Sagerman, “Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home,” Pediatrics 128, no. 1 (2011): 182–200.
- 5L. E. Bell, S. M. Bartosh, C. L. Davis, et al., “Adolescent Transition to Adult Care in Solid Organ Transplantation: A Consensus Conference Report,” American Journal of Transplantation 8, no. 11 (2008): 2230–2242.
- 6M. McManus, P. White, R. Pirtle, C. Hancock, M. Ablan, and R. Corona-Parra, “Incorporating the Six Core Elements of Health Care Transition Into a Medicaid Managed Care Plan: Lessons Learned From a Pilot Project,” Journal of Pediatric Nursing 30, no. 5 (2015): 700–713.
- 7M. Kaufman, “Transition of Cognitively Delayed Adolescent Organ Transplant Recipients to Adult Care,” Pediatric Transplantation 10, no. 4 (2006): 413–417.
- 8J. C. Suris, P. A. Michaud, and R. Viner, “The Adolescent With a Chronic Condition. Part I: Developmental Issues,” Archives of Disease in Childhood 89, no. 10 (2004): 938–942.
- 9J. J. Arnett, D. Offer, and M. A. Fine, “Reckless Driving in Adolescence: 'State' and 'Trait' Factors,” Accident; Analysis and Prevention 29, no. 1 (1997): 57–63.
- 10A. M. Gutiérrez-Colina, C. K. Eaton, J. L. Lee, et al., “Executive Functioning, Barriers to Adherence, and Nonadherence in Adolescent and Young Adult Transplant Recipients,” Journal of Pediatric Psychology 41, no. 7 (2016): 759–767.
- 11B. J. Foster, “Heightened Graft Failure Risk During Emerging Adulthood and Transition to Adult Care,” Pediatric Nephrology 30, no. 4 (2015): 567–576.
- 12N. Gogtay, J. N. Giedd, L. Lusk, et al., “Dynamic Mapping of Human Cortical Development During Childhood Through Early Adulthood,” Proceedings of the National Academy of Sciences of the United States of America 101, no. 21 (2004): 8174–8179.
- 13H. E. Fernandez and B. J. Foster, “Long-Term Care of the Pediatric Kidney Transplant Recipient,” Clinical Journal of the American Society of Nephrology 17, no. 2 (2022): 296–304.
- 14A. M. Troen, T. M. Scott, K. E. D'Anci, et al., “Cognitive Dysfunction and Depression in Adult Kidney Transplant Recipients: Baseline Findings From the FAVORIT Ancillary Cognitive Trial (FACT),” Journal of Renal Nutrition 22, no. 2 (2012): 268–276.e3.
- 15L. Leto and M. Feola, “Cognitive Impairment in Heart Failure Patients,” Journal of Geriatric Cardiology 11, no. 4 (2014): 316–328.
- 16L. G. Sorensen, K. Neighbors, K. Martz, et al., “Cognitive and Academic Outcomes After Pediatric Liver Transplantation: Functional Outcomes Group (FOG) results,” American Journal of Transplantation 11, no. 2 (2011): 303–311.
- 17M. A. Martens, L. Jones, and S. Reiss, “Organ Transplantation, Organ Donation and Mental Retardation,” Pediatric Transplantation 10, no. 6 (2006): 658–664.
- 18D. Ohnemus, K. Neighbors, K. Rychlik, et al., “Health-Related Quality of Life and Cognitive Functioning in Pediatric Liver Transplant Recipients,” Liver Transplantation 26, no. 1 (2020): 45–56.
- 19M. J. Park, T. Paul Mulye, S. H. Adams, C. D. Brindis, and C. E. Irwin, Jr., “The Health Status of Young Adults in the United States,” The Journal of Adolescent Health 39, no. 3 (2006): 305–317.
- 20A. Parmar, S. M. Vandriel, and V. L. Ng, “Health-Related Quality of Life After Pediatric Liver Transplantation: A Systematic Review,” Liver Transplantation 23, no. 3 (2017): 361–374.
- 21C. Samsel, S. Tapsak, K. Thomson, et al., “Psychotropic Medication Use Trends in a Large Pediatric and Young Adult Solid Organ Transplant Population,” Pediatric Transplantation 23, no. 3 (2019): e13380.
- 22K. Thomson, K. McKenna, K. Bedard-Thomas, M. Oliva, and P. Ibeziako, “Behavioral Health Care in Solid Organ Transplantation in a Pediatric Setting,” Pediatric Transplantation 22, no. 5 (2018): e13217.
- 23M. L. McCormick King, L. L. Mee, A. M. Gutierrez-Colina, C. K. Eaton, J. L. Lee, and R. L. Blount, “Emotional Functioning, Barriers, and Medication Adherence in Pediatric Transplant Recipients,” Journal of Pediatric Psychology 39, no. 3 (2014): 283–293.
- 24T. Hind, S. Lui, E. Moon, et al., “Post-Traumatic Stress As a Determinant of Quality of Life in Pediatric Solid-Organ Transplant Recipients,” Pediatric Transplantation 25, no. 4 (2021): e14005.
- 25E. Shemesh, S. Lurie, M. L. Stuber, et al., “A Pilot Study of Posttraumatic Stress and Nonadherence in Pediatric Liver Transplant Recipients,” Pediatrics 105, no. 2 (2000): E29.
- 26“ Six Core Elements of Health Care Transition™,” accessed July 17, 2023, https://www.gottransition.org/resource/?system-differences-between-pediatric-and-adult-health-care.
- 27A. Schmidt, S. M. Ilango, M. A. McManus, K. K. Rogers, and P. H. White, “Outcomes of Pediatric to Adult Health Care Transition Interventions: An Updated Systematic Review,” Journal of Pediatric Nursing 51 (2020): 92–107.
- 28L. Y. King, B. Kosmach-Park, A. Parish, D. Niedzwiecki, W. E. Jackson, and J. M. Vittorio, “Current Approach to Health Care Transition and Integration Into Adult Care for Pediatric Liver Transplant Recipients: A Call for Partnership,” Clinical Transplantation 37 (2023): e14990.
- 29D. L. Wood, G. S. Sawicki, M. D. Miller, et al., “The Transition Readiness Assessment Questionnaire (TRAQ): Its Factor Structure, Reliability, and Validity,” Academic Pediatrics 14, no. 4 (2014): 415–422.
- 30M. E. Ferris, D. H. Harward, K. Bickford, et al., “A Clinical Tool to Measure the Components of Health-Care Transition From Pediatric Care to Adult Care: The UNC TR(x)ANSITION Scale,” Renal Failure 34, no. 6 (2012): 744–753.
- 31M. A. Johnson, K. Javalkar, M. van Tilburg, et al., “The Relationship of Transition Readiness, Self-Efficacy, and Adherence to Preferred Health Learning Method by Youths With Chronic Conditions,” Journal of Pediatric Nursing 30, no. 5 (2015): e83–e90.
- 32M. Ferris, S. Cohen, C. Haberman, et al., “Self-Management and Transition Readiness Assessment: Development, Reliability, and Factor Structure of the STARx Questionnaire,” Journal of Pediatric Nursing 30, no. 5 (2015): 691–699.
- 33S. E. Cohen, S. R. Hooper, K. Javalkar, et al., “Self-Management and Transition Readiness Assessment: Concurrent, Predictive and Discriminant Validation of the STARx Questionnaire,” Journal of Pediatric Nursing 30, no. 5 (2015): 668–676.
- 34P. Vajro, B. Fischler, P. Burra, et al., “The Health Care Transition of Youth With Liver Disease Into the Adult Health System: Position Paper From ESPGHAN and EASL,” Journal of Pediatric Gastroenterology and Nutrition 66, no. 6 (2018): 976–990.
- 35C. M. Anton, K. Anton, and R. J. Butts, “Preparing for Transition: The Effects of a Structured Transition Program on Adolescent Heart Transplant Patients' Adherence and Transplant Knowledge,” Pediatric Transplantation 23, no. 7 (2019): e13544.
- 36N. Sagar, J. A. Leithead, C. Lloyd, et al., “Pediatric Liver Transplant Recipients Who Undergo Transfer to the Adult Healthcare Service Have Good Long-Term Outcomes,” American Journal of Transplantation 15, no. 7 (2015): 1864–1873.
- 37E. M. Fredericks, J. C. Magee, S. J. Eder, et al., “Quality Improvement Targeting Adherence During the Transition From a Pediatric to Adult Liver Transplant Clinic,” Journal of Clinical Psychology in Medical Settings 22, no. 2–3 (2015): 150–159.
- 38N. Chadi, K. Amaria, and M. Kaufman, “Expand Your HEADS, Follow the THRxEADS!” Paediatrics & Child Health 22, no. 1 (2017): 23–25.
- 39M. R. Costanzo, M. R. Costanzo, A. Dipchand, et al., “The International Society of Heart and Lung Transplantation Guidelines for the Care of Heart Transplant Recipients,” The Journal of Heart and Lung Transplantation 29, no. 8 (2010): 914–956.
- 40C. E. Hine, H. B. Howell, and K. A. Yonkers, “Integration of Medical and Psychological Treatment Within the Primary Health Care Setting,” Social Work in Health Care 47, no. 2 (2008): 122–134.
- 41V. M. Rizzo, “Social Work Support Services for Stroke Patients: Interventions and Outcomes,” Social Work in Health Care 43, no. 1 (2006): 33–56.
- 42J. Vittorio, B. Kosmach-Park, L. Y. King, et al., “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,” Journal of Pediatric Gastroenterology and Nutrition 76, no. 1 (2023): 84–101.
- 43J. Weissberg-Benchell, T. E. Zielinski, S. Rodgers, et al., “Pediatric Health-Related Quality of Life: Feasibility, Reliability and Validity of the PedsQL Transplant Module,” American Journal of Transplantation 10, no. 7 (2010): 1677–1685.
