Pediatric health‐related quality of life after intestinal transplantation

Abstract

As outcomes after ITx improve, greater emphasis is needed on HRQOL. The primary aims of this study were to (i) assess the feasibility of measuring HRQOL in pediatric ITx recipients, (ii) measure HRQOL using validated instruments, and (iii) compare HRQOL in ITx recipients to healthy normal (NL) children. The CHQ and Pediatric Quality of Life (PedsQL4.0) instruments were administered to both patients and parents at outpatient visits. All 24 eligible patients were enrolled. The median age at study enrollment was 6.0 yr (range: 2-18 yr), and the median time from transplant to study enrollment was 2.8 yr (range: 0.5-11.8 yr). The majority of subjects were male (58%), Latino (58%), and liver-inclusive (92%) recipients. For CHQ and PedsQL4.0, parental responses were significantly lower in multiple categories including physical health and social functioning compared to healthy norms. Patient responses were not different from NL using CHQ but using PedsQL4.0 were significantly lower in the school functioning subcategory and psychosocial health summary score. HRQOL as reported by children and families after ITx is significantly lower in multiple categories compared to NL.

Presurgical Psychosocial Predictors of Acute Postsurgical Pain and Quality of Life in Children Undergoing Major Surgery

“…Consistent with prior studies of acute postsurgical pain experienced while in the hospital 13 , the majority of children in our sample also reported moderate-severe pain that persisted at two weeks after surgery. As expected, children also reported health-related quality of life impairments 2 weeks after major surgery, which is consistent with studies of HRQOL at long-term follow-up in children after major surgeries 9,22,30 . Physical health was markedly impaired with average levels 6.2 standard deviations below established mean scores for children without a chronic health condition 2 .…”

Intestinal Transplant Registry Report: Global Activity and Trends

“…Our analysis showed that inclusion of the colon did not adversely affect survival and recipients with a colon segment had a 5% higher rate of independence from supplemental PN. These findings are consistent with individual program reports (36,37) and experimental data showing that retention of the ileocecal valve and the right colon enhance gut function through better fluid absorption and uptake of free fatty acids (38)(39)(40)(41)(42)(43). Since IT recipients frequently experience motility and absorption issues posttransplant (33), it is worthwhile to consider if including a colon segment with an intestinal transplant should become the standard of care.…”

“…By 6 months after transplantation, the ITR data show that most recipients resume an oral diet and return to normal activities. Individual center studies recently reported have also documented that (1) adult IT recipients return to work and enjoy a good quality of life (33) and (2) pediatric recipients resume oral nutrition and enjoy catchup growth and an improved quality of life (34)(35)(36)(37).…”

The Current State of Intestine Transplantation: Indications, Techniques, Outcomes and Challenges

“…Quality-of-life (QOL) has been demonstrated to be better after intestine transplantation compared to patients remaining on PN (56)(57)(58). In two studies of QOL after intestine transplantation, the presence of G-tubes or ostomies and repeat hospitalization were factors associated with decreased scores (56,58).…”

“…In two studies of QOL after intestine transplantation, the presence of G-tubes or ostomies and repeat hospitalization were factors associated with decreased scores (56,58). The Pittsburgh group (57) compared QOL before and after intestine transplantation in 76 surviving adult recipients with mixed results.…”