C Blackwell Munksgaard 2004 Copyright
American Journal of Transplantation 2004; 4: 407–413 Blackwell Munksgaard
doi: 10.1111/j.1600-6143.2004.00330.x
Quality of Life after Pediatric Intestinal Transplantation: The Perception of Pediatric Recipients and Their Parents Debra Sudan∗ , Simon Horslen, Jean Botha, Wendy Grant, Clarivet Torres, Byers Shaw Jr. and Alan Langnas University of Nebraska Medical Center, Organ Transplantation Program, Nebraska Medical Center, Omaha, NB ∗ Corresponding author: Debra Sudan,
[email protected] The objective was to examine the perception of physical and psychosocial functioning of pediatric intestinal transplant recipients who are beyond the perioperative period and compare these with normal and chronically ill children. Child and parent forms of the Child Health Questionnaire were administered to all 29 pediatric intestinal transplant recipients between the ages of 5 and 18 years who had had a small bowel transplantation 1 year previous and had a functional allograft. Comparison was made with published norms and scores for pediatric patients on hemodialysis. Intestinal transplant recipients (on average 5 years after intestinal transplantation and at a mean age 11 years) reported similar scores in all domains compared with normal children. Parents of intestinal transplant recipients noted decreased function in several domains related to their child’s general health, physical functioning, and the impact of the illness on parental time, emotions and family activities. Intestinal transplant recipients beyond the perioperative period perceive their physical and psychosocial functioning as similar to normal school children. Parental proxy assessments differ from the recipients, with the parent’s perception of decreased general health and physical functioning for intestinal transplant recipients compared with norms. Key words: Intestinal transplant, pediatric, quality of life, small bowel transplant Received 29 August 2003, revised 6 October 2003 and accepted for publication 7 October 2003
Introduction Intestinal transplantation has become an accepted therapy for individuals permanently dependent on parenteral nutrition (TPN) with life-threatening complications. Although individual centers and the international intestinal transplant registry (ITR) have summarized current patient and graft survival, little information regarding functional outcome is available (1–4). Health-related quality of life is defined as ‘the extent of the impact of the disease process on physical, psychological and social aspects of a person’s life and feeling of wellbeing’ (5). Quality of life (QOL) is increasingly used as a measure of therapeutic interventions. The goal in developing measures of QOL is to create methods that are reproducible and correlate with an individual’s level of health or sense of wellness. Until recently, QOL has not been routinely assessed in pediatric patients, as it has not been clear whether very young children can reliably understand the concepts and parents may be biased by their own emotional stress related to their child’s illness. There has been little research focused on children’s reports of their own physical and psychosocial health and many studies have used parent-proxies in studies of pediatric patients. Some evidence exists that children may reliably report on such concepts as pain as early as 5 years of age (6–8). There is conflicting evidence as to the degree of correlation between children’s assessment of their own psychosocial health and their parent’s assessment and it is not clear what these differences mean when they occur (9,10). In 1997 we first attempted to examine the quality of life of intestinal transplantation with an ad hoc instrument developed at our institution (11). We sought to summarize objective measures that would affect QOL and found the majority of patients maintained nutrition without TPN, although persistent oral aversion was a problem in 33% of children (11). We also found that patients missed on average 7–9 days of school or work/year for physician visits and hospitalizations. Other studies of QOL in this patient group are limited to a small number of adult recipients and to an assessment of the QOL of the parent (12–15). No
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previous studies of QOL of pediatric intestinal transplant recipients using validated instruments were identified in the literature, although children account for a large proportion of intestinal transplant recipients.
Table 1: Summary of demographic characteristics of pediatric intestinal transplant recipients and their parents who responded to the Child Health Questionnaire survey
The Child Health Questionnaire (CHQ) is a validated instrument that was specifically developed to assess physical and psychosocial functioning in children aged 5– 18 years (16). We have administered the CHQ to both the pediatric recipient and the parent to assess the health and physical functioning of intestinal transplant recipients and compare these perceptions with published results of ‘normal’ children and children with other chronic illnesses.
Number who completed questionnaires Age, years Gender (male/female) Grade completed in school Preschool Grade 1–4 Grade 5–8 High school Vocational school College Graduate school/degree Working status of the parent Not working owing to child’s health Homemaker/not working, other Working full-time or part-time Relationship to recipient Biological parent Foster parent Adoptive parent Guardian Marital status Single parent Married Divorced
Methods Office records were reviewed to identify all pediatric intestinal transplant recipients, and no patients have been lost to follow up. All 29 pediatric small bowel transplant recipients between the ages of 5 and 18 years with intact intestinal allografts (either isolated small bowel or combined with another organ, most commonly the liver) and more than 1 year of follow up after intestinal transplantation were invited by mail to complete copies of the child form (CF-87) of the CHQ. An IRB-approved letter of invitation was included with the CHQ forms that included all elements of a standard consent such that the return of the questionnaire was deemed as implied consent. At the same time we asked parents to complete parental forms (PF-50) of the CHQ regarding their children, i.e. parental proxy assessments. Nonresponders were called by telephone to determine whether they would like a second copy mailed. None formally declined to participate, however, repeated nonresponse after the second mailing was deemed a desire not to participate. Children with failed allografts, who were explanted and not on immunosuppression were excluded. Two patients who had previously failed allografts and were alive with a functional graft after retransplantation were included. Only one eligible patient was excluded, because she was intubated in the ICU at the time of the initial mailing and she later expired. The CHQ is a self-administered questionnaire assessing 14 health domains: global health, physical functioning, limitations to role or social functions (owing to emotional, behavioral or physical reasons), bodily pain, behavior, mental health, self esteem, parental impact in terms of time and emotion, family activities, family cohesion and change in health status (17). All forms were without patient identifiers to encourage patients to respond as accurately as possible. The responses to questions were converted to a scale from 0 to 100 (0 = lowest and 100 = highest) for each of the domains and for global scores using the author’s instructions (17). Mean values are reported ± standard deviation. Mean scores were then compared with previously published scores of other populations, using calculation of 95% confidence intervals from the mean and variance (18). Significance was determined by the absence of overlap of the 95% confidence intervals, thereby corresponding to a p-value of
