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)