Quality of life in long term survivors of pediatric intestinal transplantation compared with liver transplantation and home parenteral nutrition: A prospective single-center pilot study.
Intestinal transplantation
children
home parenteral nutrition
liver transplantation
quality of life
Journal
Pediatric transplantation
ISSN: 1399-3046
Titre abrégé: Pediatr Transplant
Pays: Denmark
ID NLM: 9802574
Informations de publication
Date de publication:
May 2021
May 2021
Historique:
revised:
11
01
2021
received:
11
11
2020
accepted:
18
01
2021
pubmed:
17
2
2021
medline:
21
1
2022
entrez:
16
2
2021
Statut:
ppublish
Résumé
Health-related quality of life (HRQOL) after intestinal transplantation (IT) is important, as many psychological troubles have been reported in these patients on the long term. Our aim was to assess and compare HRQOL of patients after IT to patients after liver transplantation (LT) or on home parenteral nutrition (HPN) for intestinal failure. A cross-sectional study included patients and their parents between 10 and 18 years of age, on HPN for more than 2 years, or who underwent IT or LT, with a graft survival longer than 2 years. Quality of life was explored by Child Health Questionnaire. Thirteen children-parents dyads after IT, 10 after LT, and eight children on HPN completed the survey. Patients were a median age of 14 years old, a median of 10 years post-transplantation or on HPN. Patients after IT scored lower than patients after LT or on HPN in "social limitations due to behavioral difficulties" and in "behavior." They scored higher than those on HPN in "global health." Parents of children after IT scored lower than those after LT in many domains. No relevant correlation with clinical data was found. Our study showed the multi-level impact of IT on quality of life of patients and their parents. It highlights the importance of a regular psychological follow-up for patients, but also of a psychological support for families. Helping the patients to overcome the difficulties at adolescence may improve their mental health in adulthood.
Types de publication
Comparative Study
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e13982Informations de copyright
© 2021 Wiley Periodicals LLC.
Références
Pironi L, Hebuterne X, Van Gossum A, et al. Candidates for intestinal transplantation: a multicentre survey in Europe. Am J Gastroenterol. 2006;101:1633-1643.
Sudan D. The current state of intestine transplantation: indications, techniques, outcomes and challenges. Am J Transplant. 2014;14:1976-1984.
Fishbein TM. Intestinal transplantation. N Engl J Med. 2009;361:998-1008.
Sudan D. Long-term outcomes and quality of life after intestine transplantation. Curr Opin Organ Transplant. 2010;15:357-360.
Pironi L, Baxter JP, Lauro A, et al. Assessment of quality of life on home parenteral nutrition and after intestinal transplantation using treatment-specific questionnaires. Am J Transplant. 2012;12:S60-S66.
Ngo KD, Farmer DG, McDiarmid SV, et al. Pediatric health-related quality of life after intestinal transplantation. Pediatr Transplant. 2011;15:849-854.
Rebecchi S. Approche psychopathologique de l’enfant en nutrition parentérale prolongée ou transplanté de l’intestin. La psychiatrie de l’enfant. 2018;61:19-44.
Bucuvalas JC, Alonso E, Magee JC, et al. Improving long-term outcomes after liver transplantation in children. Am J Transplant. 2008;8:2506-2513.
Ng VL, Alonso EM, Bucuvalas JC, et al. Health status of children alive 10 years after pediatric liver transplantation performed in the US and Canada: report of the studies of pediatric liver transplantation experience. J Pediatr. 2012;160:820-826.
Yazigi NA. Long term outcomes after pediatric liver transplantation. J Pediatr Gastroenterol Hepatol Nutr. 2013;16:207-218.
Parmar A, Vandriel SM, Ng VL. Health-related quality of life after paediatric liver transplantation: a systematic review. Liver Transpl. 2017;23:361-374.
Ohnemus D, Neighbors K, Rychlik K, et al. Health-related quality of life and cognitive functioning in pediatric liver transplant recipients. Liver Transpl. 2020;26:45-46.
Anthony SJ, Pollock Barziv S, Ng VL. Quality of life after pediatric solid organ transplantation. Pediatr Clin North Am. 2010;57:559-574.
Lacaille F, Irtan S, Dupic L, et al. Twenty-eight years of intestinal transplantation in Paris: experience of the oldest European centre. Transpl Int. 2017;30:178-186.
Norsa L, Artru S, Lambe C, et al. Long term outcomes of intestinal rehabilitation in children with neonatal very short bowel syndrome: parenteral nutrition or intestinal transplantation. Clin Nutr. 2019;38:926-933.
Norsa L, Gupte G, Ramos Boluda E, et al. Life of patients 10 years after a successful paediatric intestinal transplantation in Europe. Am J Transplant. 2018;18:1489-1493.
Lacaille F, Gupte G, Goulet O. Intestinal transplantation: on a long and uneven road from the past to the future. Chapter 5.2.4. J Pediatr Gastroenterol Nutr. 2018;66:S88-93.
Sudan D, Horslen S, Botha J, et al. Quality of life after pediatric intestinal transplantation: the perception of pediatric recipients and their parents. Am J Transplant. 2004;4:407-413.
Andres AM, Alameda A, Mayoral O, et al. Health-related quality of life in pediatric intestinal transplantation. Pediatr Transplant. 2014;18:746-756.
Sanchez SE, McAteer JP, Goldin AB, et al. Health-related quality of life in children with intestinal failure. J Pediatr Gastroenterol Nutr. 2013;57:330-334.
Landgraf JM, Abetz L, Ware JE. Child Health Questionnaire. A User’s Manual. Boston, MA: HealthAct; 1999.
Landgraf JM, Abetz L. Functional status and well-being of children representing three cultural groups: initial self-reports using the CHQ-CF87. Psychol Health. 1997;12:839-854.
Golfieri L, Lauro A, Tossani E, et al. Psychological adaptation and quality of life of adult intestinal transplant recipients: University of Bologna experience. Transplant Proc. 2010;42:42-44.
Tovmassian LT, Bentata H. Le traumatisme dans tous ses états: traumatismes, lien social et éthique. In: Schwering KL, ed. Corps Traumatique, Corps Malade, Corps Médical. Paris: In Press.; 2016;47-57.
Nevins TE. Non-compliance and its management in teenagers. Pediatr Transplant. 2002;6:475-479.
Bucuvalas JC, Britto M. Health-related quality of life after liver transplantation: it’s not all about the liver. J Pediatr Gastroenterol Nutr. 2003;37:106-108.
Theunissen NC, Vogels TG, Koopman HM, et al. The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res. 1998;7:387-397.
Adam R, Karam V, Cailliez V, et al. 2018 annual report of the European liver transplant registry (ELTR) - 50-year evolution of liver transplantation. Transpl Int. 2018;31:1293-1317.
Raghu VK, Beaumont JL, Everly MJ, Venick RS, Lacaille F, Mazariegos GV. Pediatric intestinal transplantation: analysis of the intestinal transplant registry. Pediatr Transplant. 2019;23(8):e13580.
Burns KE, Duffett M, Kho ME, et al. A guide for the design and conduct of self-administered surveys of clinicians. Can Med Assoc J. 2008;179:245-252.