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

Abstract

IT has become an accepted therapy for individuals permanently dependent on home parenteral nutrition HPN with life-threatening complications. [1][2][3] Time has come to assess not only the medical results, but also the health-related quality of life HRQOL of transplanted patients and their families. HRQOL is an important therapeutic index, especially for children with chronic illnesses. Until now, few studies have evaluated HRQOL after IT, using multidimensional questionnaires. [4][5][6] A pilot study in our unit, comparing the HRQOL between children after IT and on HPN, showed that transplanted patients obtained lower scores in general, especially in the dimensions of autonomy and relationships with others, 7 while these differences had not been found in adults. 5

Multi-disciplinary Insights from the First European Forum on Visceral Myopathy 2022 Meeting

“…The Necker-Enfants Malades in Paris, the largest transplant center in Europe, performed the world’s first small bowel transplant in 1987 [ 67 ]. Data from 2021 [ 68 ] indicated 5-year post-bowel transplant survival of around 60% in the United States and 50% globally, suggesting chronic TPN may be safer than intestinal transplant. Primary post-transplant problems include early acute rejection, late rejection, graft failure, and complications of immunosuppression including late infection, renal failure, and cancer.…”

Pediatric intestine and multivisceral transplant

“…However, ITx recipients scored lower than patients on HPN and after LT in “behavior” and “social limitations due to behavioral difficulties”. While parents of children post ITx scored their children lower than those post LT [68 ▪▪ ]. A QoL tool specific for intestinal failure patients on chronic TPN and ITx patients is needed for better assessment of QoL and discuss transplant solely for QoL [40].…”

Neuropsychological and biopsychosocial evolution, therapeutic adherence and unmet care needs during paediatric transplantation: study protocol of a mixed-methods design (observational cohort study and focus groups) – the TransplantKIDS mental health project

“…In particular, the promotion and evaluation of the mental health of patients ( Di Giuseppe et al, 2020 ; Ünay et al, 2020 ; Proli et al, 2021 ), as well as of their relatives, must be an essential axis of action in the clinical care of the paediatric population undergoing transplantation, which has become especially evident during the recent health emergency situation resulting from the COVID-19 pandemic ( Zhao et al, 2020 ). Importantly, patients’ mental health problems (such as, anxiety, depression, distress, behavioral problems) and family conflicts are modifiable psycho-social predictors of non-adherence to medications ( Killian et al, 2018 ) and, particularly relevant, suffering depression increases risk of mortality among patients after organ transplant ( Dew et al, 2015 ).…”