Research progress on the transition from pediatric liver transplant recipients to adult stage medical care_CHINESE JOURNAL OF BASES AND CLINICS IN GENERAL SURGERY

Authors：

HUANG Jing ^1,2,3 , XU Jing ^1,2,3 ,  YANG Jiayin ^1,2

1. Department of General Surgery, West China Hospital, Sichuan University, Chengdu 610041, P. R. China;
2. Liver Transplantation Center, Transplantation Center, West China Hospital, Sichuan University, Chengdu 610041, P. R. China;
3. West China School of Nursing, Sichuan University, Chengdu 610041, P. R. China;

Corresponding author：

YANG Jiayin, Email: doctoryjy@scu.edu.cn

Keywords：

liver transplantation; children; health care transition; review

DOI：

10.7507/1007-9424.202302018

Video：

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Objective To summarize the research progress of health care transition (HCT) for pediatric liver transplant recipients. Method The literatures of HCT for pediatric liver transplant recipients were reviewed, and the concept, related factors, interventions and methods of health care transition were summarized. Results HCT is the process of moving from a child/family-centered model of care to an adult or patient-centered model of health care, and influenced by health care provider, child and caregivers, and other factors such as medical policy and economic level. Personalized transition program has more benefits for improving the experience and health outcomes of patients. Conclusion problem-oriented and demand-oriented transition program is recommended, early intervention to improve self-management abilities of children, information construction of pediatric medical system and multidisciplinary team building are important for improving health outcomes of patients.

Citation： HUANG Jing, XU Jing, YANG Jiayin. Research progress on the transition from pediatric liver transplant recipients to adult stage medical care. CHINESE JOURNAL OF BASES AND CLINICS IN GENERAL SURGERY, 2023, 30(6): 757-763. doi: 10.7507/1007-9424.202302018 Copy

1.	石炳毅. 继往开来, 中国器官移植的发展现状—在2018年中华医学会器官移植学年会上的报告. 器官移植, 2019, 10(1): 32-35.
2.	赵东, 夏强. 小儿肝移植的现状与展望. 肝胆外科杂志, 2017, 25(4): 244-247.
3.	中国儿童肝移植年度科学报告. 中国肝移植注册(CLTR). http://www.cltr.org.
4.	夏强, 朱欣烨. 儿童肝移植发展现状及展望. 临床小儿外科杂志, 2022, 21(5): 401-404.
5.	刘名鹤. 以家庭为中心的护理模式下儿童肝移植术后延续护理内容的研究. 吉林大学, 2020.
6.	Wan P, Xu D, Zhang J, et al. Liver transplantation for biliary atresia: A nationwide investigation from 1996 to 2013 in mainland China. Pediatr Transplant, 2016, 20(8): 1051-1059.
7.	Anton CM, Anton K, Butts RJ. Preparing for transition: The effects of a structured transition program on adolescent heart transplant patients' adherence and transplant knowledge. Pediatr Transplant, 2019, 23(7): e13544. doi: 10.1111/petr.13544.
8.	Bashore L, Bender J. Evaluation of the utility of a transition workbook in preparing adolescent and young adult cancer survivors for transition to adult services: A pilot study. J Pediatr Oncol Nurs, 2016, 33(2): 111-118.
9.	Bell LE. The Transition of a pediatric kidney transplant recipient from childhood to adult care. Clin J Am Soc Nephrol, 2022, 17(5): 736-738.
10.	Cousino MK, Schumacher KR, Rea KE, et al. Psychosocial functioning in pediatric heart transplant recipients and their families. Pediatr Transplant, 2018, 22(2). doi: 10.1111/petr.13110.
11.	Bell LE, Bartosh SM, Davis CL, et al. Adolescent transition to adult care in solid organ transplantation: a consensus conference report. Am J Transplant, 2008, 8(11): 2230-2242.
12.	DiNorcia J, Bucuvalas JC. Leaving the nest or flying the coop? The transition from pediatric to adult care is universally challenging. Pediatr Transplant, 2022, 26(3): e14215. doi:10.1111/petr.14215.
13.	Altfeld SJ, Shier GE, Rooney M, et al. Effects of an enhanced discharge planning intervention for hospitalized older adults: a randomized trial. Gerontologist, 2013, 53(3): 430-440.
14.	Kato TS, Gomi H, Aizawa Y, et al. Are we ready for building transition programs for heart transplant recipients in Japan? —Knowing the unique background is the first step for discussion. Front Pediatr, 2022, 10: 935167. doi:10.3389/fped.2022.935167.
15.	Sandquist M, Davenport T, Monaco J, et al. The transition to adulthood for youth living with rare diseases. Children (Basel), 2022, 9(5): 710. doi:10.3390/children9050710.
16.	儿童移植过渡期的管理. 中华器官移植杂志, 2021, 42(12): C1. doi: 10.3760/cma.j.issn.0254-1785.2021.12.101.
17.	Chadi N, Amaria K, Kaufman M. Expand your HEADS, follow the THRxEADS! Paediatr Child Health, 2017, 22(1): 23-25.
18.	Chandra S, Luetkemeyer S, Romero R, et al. Growing up: not an easy transition-perspectives of patients and parents regarding transfer from a pediatric liver transplant center to adult care. Int J Hepatol, 2015, 2015: 765957. doi: 10.1155/2015/765957.
19.	American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 2002, 110(6 Pt 2): 1304-1306.
20.	Collins MM, Ou Z, Millar MM, et al. Attitudes & practices surrounding pregnancy post heart transplant among pediatric providers. J Heart Lung Transplant, 2022, 41(11): 1611-1616.
21.	Fredericks EM, Dore-Stites D, Well A, et al. Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatr Transplant, 2010, 14(8): 944-953.
22.	Fair CD, Sullivan K, Dizney R, et al. “It’s like losing a part of my family”: transition expectations of adolescents living with perinatally acquired HIV and their guardians. AIDS Patient Care STDS, 2012, 26(7): 423-429.
23.	Ferris M, Cohen S, Haberman C, et al. Self-management and transition readiness assessment: development, reliability, and factor structure of the STARx questionnaire. J Pediatr Nurs, 2015, 30(5): 691-699.
24.	Fredericks EM. Nonadherence and the transition to adulthood. Liver Transpl, 2009, 15 Suppl 2: S63-S69.
25.	徐毅超, 周璇, 杜青. 儿童疾病与父母过度保护问题现状. 中华实用儿科临床杂志, 2016, 31(19): 1515-1517.
26.	Pape L, Ernst G. Health care transition from pediatric to adult care: an evidence-based guideline. Eur J Pediatr, 2022, 181(5): 1951-1958.
27.	Vittorio J, Kosmach-Park B, King LY, 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. J Pediatr Gastroenterol Nutr, 2023, 76(1): 84-101.
28.	Huang J, Porterfield SL. Changes in health insurance coverage and health care access as teens with disabilities transition to adulthood. Disabil Health J, 2019, 12(4): 551-556.
29.	Joshi D, Gupta N, Samyn M, et al. The management of childhood liver diseases in adulthood. J Hepatol, 2017, 66(3): 631-644.
30.	Johnson K, McBee M, Reiss J, et al. TRAQ changes: improving the measurement of transition readiness by the transition readiness assessment questionnaire. J Pediatr Nurs, 2021, 59: 188-195.
31.	Kenney LB, Melvin P, Fishman LN, et al. Transition and transfer of childhood cancer survivors to adult care: A national survey of pediatric oncologists. Pediatr Blood Cancer, 2017, 64(2): 346-352.
32.	Pediatric Transition Portal.https://www.myast.org/education/ specialty-resources/ peds- transition.
33.	Kosola S, Ylinen E, Finne P, et al. Implementation of a transition model to adult care may not be enough to improve results: National study of kidney transplant recipients. Clin Transplant, 2019, 33(1): e13449. doi: 10.1111/ctr.13449.
34.	Vajro P, Fischler B, Burra P, et al. The health care transition of youth with liver disease into the adult health system: position paper from ESPGHAN and EASL. J Pediatr Gastroenterol Nutr, 2018, 66(6): 976-990.
35.	Sharma AA, Sharma A. Pediatric to adult transition for adolescents and young adults with kidney transplant. Curr Pediatr Rep, 2022, 10: 155-163.
36.	Ohnemus D, Neighbors K, Rychlik K, et al. Health-related quality of life and cognitive functioning in pediatric liver transplant recipients. Liver Transpl, 2020, 26(1): 45-56.
37.	Parmar A, Vandriel SM, Ng VL. Health-related quality of life after pediatric liver transplantation: A systematic review. Liver Transpl, 2017, 23(3): 361-374.
38.	Perito ER, Squires JE, Bray D, et al. A Learning health system for pediatric liver transplant: the starzl network for excellence in pediatric transplantation. J Pediatr Gastroenterol Nutr, 2021, 72(3): 417-424.
39.	柏科莉, 李妍宏, 王晓. 肝移植预后的影响因素和预测方法的临床进展. 中国普外基础与临床杂志, 2020, 27(3): 383-388.
40.	苏洋, 丁佑铭. 肝移植术后早期移植物功能不全预测指标的研究进展. 中国普外基础与临床杂志, 2022, 29(6): 829-834.
41.	Schmidt A, Ilango SM, McManus MA, et al. Outcomes of pediatric to adult health care transition interventions: an updated systematic review. J Pediatr Nurs, 2020, 51: 92-107.
42.	Shemesh E, Bucuvalas JC, Anand R, et al. The medication level variability index (MLVI) predicts poor liver transplant outcomes: a prospective multi-site study. Am J Transplant, 2017, 17(10): 2668-2678.
43.	Kindem IA, Bjerre A, Hammarstrøm C, et al. Kidney-transplanted adolescents-nonadherence and graft outcomes during the transition phase: a nationwide analysis, 2000-2020. Transplantation, 2023, 107(5): 1206-1212.
44.	Weissberg-Benchell J, Zielinski TE, Rodgers S, et al. Pediatric health-related quality of life: Feasibility, reliability and validity of the PedsQL transplant module. Am J Transplant, 2010, 10(7): 1677-1685.
45.	Wong LH, Chan FW, Wong FY, et al. Transition care for adolescents and families with chronic illnesses. J Adolesc Health, 2010, 47(6): 540-546.
46.	Khorassani F, Tellier S, Tsapepas D. Pharmacist’s role in improving medication adherence in transplant recipients with comorbid psychiatric disorders. J Pharm Pract, 2019, 32(5): 568-578.
47.	万娟, 唐荔, 任秋萍, 等. 多学科协作下的快速康复管理措施对肝移植术后住院时间及并发症的影响. 中国普外基础与临床杂志, 2022, 29(3): 315-321.
48.	White P, Schmidt A, Shorr J, et al. Six Core Elements of Health Care Transition™ 3.0. Washington, DC: Got Transition, The National Alliance to Advance Adolescent Health, July 2020. https://www.gottransition.org/6ce/?leaving-full-package.
49.	Ferris ME, Harward DH, Bickford K, 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. Ren Fail, 2012, 34(6): 744-753.
50.	Wood DL, Sawicki GS, Miller MD, et al. The transition readiness assessment questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr, 2014, 14(4): 415-422.

1. 石炳毅. 继往开来, 中国器官移植的发展现状—在2018年中华医学会器官移植学年会上的报告. 器官移植, 2019, 10(1): 32-35.
2. 赵东, 夏强. 小儿肝移植的现状与展望. 肝胆外科杂志, 2017, 25(4): 244-247.
3. 中国儿童肝移植年度科学报告. 中国肝移植注册(CLTR). http://www.cltr.org.
4. 夏强, 朱欣烨. 儿童肝移植发展现状及展望. 临床小儿外科杂志, 2022, 21(5): 401-404.
5. 刘名鹤. 以家庭为中心的护理模式下儿童肝移植术后延续护理内容的研究. 吉林大学, 2020.
6. Wan P, Xu D, Zhang J, et al. Liver transplantation for biliary atresia: A nationwide investigation from 1996 to 2013 in mainland China. Pediatr Transplant, 2016, 20(8): 1051-1059.
7. Anton CM, Anton K, Butts RJ. Preparing for transition: The effects of a structured transition program on adolescent heart transplant patients' adherence and transplant knowledge. Pediatr Transplant, 2019, 23(7): e13544. doi: 10.1111/petr.13544.
8. Bashore L, Bender J. Evaluation of the utility of a transition workbook in preparing adolescent and young adult cancer survivors for transition to adult services: A pilot study. J Pediatr Oncol Nurs, 2016, 33(2): 111-118.
9. Bell LE. The Transition of a pediatric kidney transplant recipient from childhood to adult care. Clin J Am Soc Nephrol, 2022, 17(5): 736-738.
10. Cousino MK, Schumacher KR, Rea KE, et al. Psychosocial functioning in pediatric heart transplant recipients and their families. Pediatr Transplant, 2018, 22(2). doi: 10.1111/petr.13110.
11. Bell LE, Bartosh SM, Davis CL, et al. Adolescent transition to adult care in solid organ transplantation: a consensus conference report. Am J Transplant, 2008, 8(11): 2230-2242.
12. DiNorcia J, Bucuvalas JC. Leaving the nest or flying the coop? The transition from pediatric to adult care is universally challenging. Pediatr Transplant, 2022, 26(3): e14215. doi:10.1111/petr.14215.
13. Altfeld SJ, Shier GE, Rooney M, et al. Effects of an enhanced discharge planning intervention for hospitalized older adults: a randomized trial. Gerontologist, 2013, 53(3): 430-440.
14. Kato TS, Gomi H, Aizawa Y, et al. Are we ready for building transition programs for heart transplant recipients in Japan? —Knowing the unique background is the first step for discussion. Front Pediatr, 2022, 10: 935167. doi:10.3389/fped.2022.935167.
15. Sandquist M, Davenport T, Monaco J, et al. The transition to adulthood for youth living with rare diseases. Children (Basel), 2022, 9(5): 710. doi:10.3390/children9050710.
16. 儿童移植过渡期的管理. 中华器官移植杂志, 2021, 42(12): C1. doi: 10.3760/cma.j.issn.0254-1785.2021.12.101.
17. Chadi N, Amaria K, Kaufman M. Expand your HEADS, follow the THRxEADS! Paediatr Child Health, 2017, 22(1): 23-25.
18. Chandra S, Luetkemeyer S, Romero R, et al. Growing up: not an easy transition-perspectives of patients and parents regarding transfer from a pediatric liver transplant center to adult care. Int J Hepatol, 2015, 2015: 765957. doi: 10.1155/2015/765957.
19. American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 2002, 110(6 Pt 2): 1304-1306.
20. Collins MM, Ou Z, Millar MM, et al. Attitudes & practices surrounding pregnancy post heart transplant among pediatric providers. J Heart Lung Transplant, 2022, 41(11): 1611-1616.
21. Fredericks EM, Dore-Stites D, Well A, et al. Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatr Transplant, 2010, 14(8): 944-953.
22. Fair CD, Sullivan K, Dizney R, et al. “It’s like losing a part of my family”: transition expectations of adolescents living with perinatally acquired HIV and their guardians. AIDS Patient Care STDS, 2012, 26(7): 423-429.
23. Ferris M, Cohen S, Haberman C, et al. Self-management and transition readiness assessment: development, reliability, and factor structure of the STARx questionnaire. J Pediatr Nurs, 2015, 30(5): 691-699.
24. Fredericks EM. Nonadherence and the transition to adulthood. Liver Transpl, 2009, 15 Suppl 2: S63-S69.
25. 徐毅超, 周璇, 杜青. 儿童疾病与父母过度保护问题现状. 中华实用儿科临床杂志, 2016, 31(19): 1515-1517.
26. Pape L, Ernst G. Health care transition from pediatric to adult care: an evidence-based guideline. Eur J Pediatr, 2022, 181(5): 1951-1958.
27. Vittorio J, Kosmach-Park B, King LY, 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. J Pediatr Gastroenterol Nutr, 2023, 76(1): 84-101.
28. Huang J, Porterfield SL. Changes in health insurance coverage and health care access as teens with disabilities transition to adulthood. Disabil Health J, 2019, 12(4): 551-556.
29. Joshi D, Gupta N, Samyn M, et al. The management of childhood liver diseases in adulthood. J Hepatol, 2017, 66(3): 631-644.
30. Johnson K, McBee M, Reiss J, et al. TRAQ changes: improving the measurement of transition readiness by the transition readiness assessment questionnaire. J Pediatr Nurs, 2021, 59: 188-195.
31. Kenney LB, Melvin P, Fishman LN, et al. Transition and transfer of childhood cancer survivors to adult care: A national survey of pediatric oncologists. Pediatr Blood Cancer, 2017, 64(2): 346-352.
32. Pediatric Transition Portal.https://www.myast.org/education/ specialty-resources/ peds- transition.
33. Kosola S, Ylinen E, Finne P, et al. Implementation of a transition model to adult care may not be enough to improve results: National study of kidney transplant recipients. Clin Transplant, 2019, 33(1): e13449. doi: 10.1111/ctr.13449.
34. Vajro P, Fischler B, Burra P, et al. The health care transition of youth with liver disease into the adult health system: position paper from ESPGHAN and EASL. J Pediatr Gastroenterol Nutr, 2018, 66(6): 976-990.
35. Sharma AA, Sharma A. Pediatric to adult transition for adolescents and young adults with kidney transplant. Curr Pediatr Rep, 2022, 10: 155-163.
36. Ohnemus D, Neighbors K, Rychlik K, et al. Health-related quality of life and cognitive functioning in pediatric liver transplant recipients. Liver Transpl, 2020, 26(1): 45-56.
37. Parmar A, Vandriel SM, Ng VL. Health-related quality of life after pediatric liver transplantation: A systematic review. Liver Transpl, 2017, 23(3): 361-374.
38. Perito ER, Squires JE, Bray D, et al. A Learning health system for pediatric liver transplant: the starzl network for excellence in pediatric transplantation. J Pediatr Gastroenterol Nutr, 2021, 72(3): 417-424.
39. 柏科莉, 李妍宏, 王晓. 肝移植预后的影响因素和预测方法的临床进展. 中国普外基础与临床杂志, 2020, 27(3): 383-388.
40. 苏洋, 丁佑铭. 肝移植术后早期移植物功能不全预测指标的研究进展. 中国普外基础与临床杂志, 2022, 29(6): 829-834.
41. Schmidt A, Ilango SM, McManus MA, et al. Outcomes of pediatric to adult health care transition interventions: an updated systematic review. J Pediatr Nurs, 2020, 51: 92-107.
42. Shemesh E, Bucuvalas JC, Anand R, et al. The medication level variability index (MLVI) predicts poor liver transplant outcomes: a prospective multi-site study. Am J Transplant, 2017, 17(10): 2668-2678.
43. Kindem IA, Bjerre A, Hammarstrøm C, et al. Kidney-transplanted adolescents-nonadherence and graft outcomes during the transition phase: a nationwide analysis, 2000-2020. Transplantation, 2023, 107(5): 1206-1212.
44. Weissberg-Benchell J, Zielinski TE, Rodgers S, et al. Pediatric health-related quality of life: Feasibility, reliability and validity of the PedsQL transplant module. Am J Transplant, 2010, 10(7): 1677-1685.
45. Wong LH, Chan FW, Wong FY, et al. Transition care for adolescents and families with chronic illnesses. J Adolesc Health, 2010, 47(6): 540-546.
46. Khorassani F, Tellier S, Tsapepas D. Pharmacist’s role in improving medication adherence in transplant recipients with comorbid psychiatric disorders. J Pharm Pract, 2019, 32(5): 568-578.
47. 万娟, 唐荔, 任秋萍, 等. 多学科协作下的快速康复管理措施对肝移植术后住院时间及并发症的影响. 中国普外基础与临床杂志, 2022, 29(3): 315-321.
48. White P, Schmidt A, Shorr J, et al. Six Core Elements of Health Care Transition™ 3.0. Washington, DC: Got Transition, The National Alliance to Advance Adolescent Health, July 2020. https://www.gottransition.org/6ce/?leaving-full-package.
49. Ferris ME, Harward DH, Bickford K, 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. Ren Fail, 2012, 34(6): 744-753.
50. Wood DL, Sawicki GS, Miller MD, et al. The transition readiness assessment questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr, 2014, 14(4): 415-422.

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Research progress on the transition from pediatric liver transplant recipients to adult stage medical care

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