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Published on: December 1, 2012
Health-related quality of life in pediatric intestinal transplantation
A M Andres1, A Alameda, O Mayoral
1Department of Pediatric Surgery, Hospital La Paz, Madrid, Spain.
Insights
Pediatric intestinal transplantation offers acceptable quality of life for survivors, improving with age and time post-transplant. Caregivers reported lower quality of life and worse health perception than their children.
Area of Science:
- Pediatric Surgery
- Transplantation Medicine
- Quality of Life Research
Background:
- Intestinal transplantation (IT) is a complex procedure for end-stage intestinal failure.
- Assessing long-term health-related quality of life (HRQOL) is crucial for evaluating transplant success.
Purpose of the Study:
- To determine the health-related quality of life (HRQOL) in pediatric intestinal transplant survivors.
- To compare patient and caregiver HRQOL and identify factors influencing outcomes.
Main Methods:
- Cross-sectional study involving 31 pediatric IT survivors (1999-2012).
- Utilized age-specific, non-disease-specific HRQOL questionnaires (TAPQOL, KINDL-R, SF-36v2).
- Caregivers completed SF-36 and a stress questionnaire (CBI).
Main Results:
- Overall patient HRQOL scores were generally acceptable, ranging from 72.2 to 83.3 across age groups.
- Highest scores noted in vitality, self-esteem, and physical/social functioning; lowest in appetite, behavior, family, school, and chronic disease perception.
- Caregivers reported lower HRQOL than patients, with 52% experiencing stress (CBI).
Conclusions:
- Pediatric intestinal transplantation can lead to an acceptable quality of life, improving with age and time post-transplant.
- IT should be considered an attractive option for eligible patients, enabling a near-normal life.
- Caregiver well-being and perceived health status warrant attention post-transplant.
Abstract:
To determine HRQOL after pediatric intestinal transplantation. Thirty-four IT survivors from 1999 to 2012 were asked to complete age-specific HRQOL non-disease-specific questionnaires: TAPQOL (0-4 yr), KINDL-R (5-7 yr; 8-12 yr; 13-17 yr), and SF-36v2 (>18 yr), all validated with Spanish population. Primary caregiver completed a SF-36 questionnaire and CBI. Thirty-one participants were included. Median age was 10.2 yr (1-29) and time after transplant 4.4 yr (0-13). Overall patient scores were 78.2 ± 10.6 (n = 8), 83.3 ± 9.7 (n = 6), 72.2 ± 9.21 (n = 6), 80.5 ± 12.4 (n = 7), and 82.2 ± 12.4 (n = 4) for each age group. Highest scores were obtained for vitality (group I), self-esteem (group IV), and physical and social functioning and emotions (group V). Lowest scores were obtained in appetite and behavior (I), family and school (III), and chronic disease perception (III, IV). No significant differences were found between caregivers and their children. CBI showed stress in 52%. SF-36 for caregivers was lower than general population. No significant differences were found depending on relevant clinical and sociodemographic data. HRQOL was acceptable and improved with age and time since transplantation. Parents had a slighter own QOL and 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.
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