• quality of life;
  • intestinal transplant;
  • paediatrics

Ngo KD, Farmer DG, McDiarmid SV, Artavia K, Ament ME, Vargas J, Busuttil RW, Colangelo J, Esmailian Y, Gordon-Burroughs S, Duffy J, Venick RS. Pediatric health-related quality of life after intestinal transplantation. Pediatr Transplantation 2011: 15: 849–854. © 2011 John Wiley & Sons A/S.

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.