2013 - ISBTS 2013 Symposium

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Oral Communications 1

7.213 - Health related quality of life in pediatric intestinal transplant patients: the Spanish experience

Presenter: Ane, Andres, , Spain
Authors: Ane Andres¹, Alicia Alameda³, Olga Mayoral³, Francisco Hernandez¹, Eva Dominguez¹, Sara Hernandez¹, Eva Martinez Ojinaga², Esther Ramos², Gerardo Prieto², Manuel Lopez Santamaria¹

Health related quality of life in pediatric intestinal transplant patients: the Spanish experience

Ane Andres¹, Alicia Alameda³, Olga Mayoral³, Francisco Hernandez¹, Eva Dominguez¹, Sara Hernandez¹, Eva Martinez Ojinaga², Esther Ramos², Gerardo Prieto², Manuel Lopez Santamaria¹

¹Pediatric Surgery, Hospital La Paz, Madrid, Spain; ²Pediatric Gastroenterology, Hospital La Paz, Madrid, Spain; ³Psychology Department, Hospital La Paz, Madrid, Spain

AIM/BACKGROUND:Intestinal transplantation survival has improved over the last decades. Good results should now include other aspects such as health-related quality of life (HRQOL). We reviewed the Spanish experience and looked for risk factors influencing QOL in these children.

PATIENT/METHODS:Thirty-four survivors who received an intestinal graft from 1999 to 2012 were classified in 5 groups according to their present age (I: 0-4y; II: 4-7y; III: 8-12y; IV: 13-16y; V: >18y). Thirty-one (one died unexpectedly and 2 did not answer) completed age-specific HRQOL non-specific-disease questionnaires during routine visits or email: TAPQOL (0-4y), KINDL-R (4-17y) and SF-36v2 (>18y), all validated with general Spanish population. Primary caregiver completed a SF-36 questionnaire and caregiver-burden interview. Domains were transformed to a 0-100% score. Median patient age was 10.2y (1-29) and time after transplant 4.4y (0-13).

RESULTS: Overall patient scores were 78.2 ±10.6 (n=8), 83.3±9.7 (n=6), 72.2±9.21 (n=5), 80.5±12.4 (n=7) and 82.2±12.4 (n=4) respectively for each group. Scores >90% were obtained for vitality (group I), self-esteem and family (group IV) and physical functioning, social functioning and emotions (group V). Scores <70% were obtained in appetite and behavior (I), family and friends (III) and chronic disease perception (III, IV). Overall caregiver score was 74.6 ±7.7 (n=29), <70% in bodily pain, general health, vitality and mental health, not finding significant differences with their children. The burden test showed no stress in 48%, mild in 28% and strong in 24%. We did not find significant differences in caregiver HRQOL depending on relevant clinical and sociodemographic data, due to the overall high scores.

CONCLUSIONS:Patients showed to have an acceptable HRQOL, which improved with age and time since transplant. Parents have a slighter worse perception of health than their children. When successful, intestinal transplantation allows a normal life in most patients and can be offered as an attractive option.

AEPANNUPA (Asociacion EspaÃ±ola de Padres con NiÃ±os con Nutricion Parenteral)

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