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Assessment of quality of life after pediatric intestinal transplantation by parents and pediatric recipients using the child health questionnaire
Assessment of Quality of Life After Pediatric Intestinal Transplantation by Parents and Pediatric Recipients Using the Child Health Questionnaire D. Sudan, K. Iyer, S. Horslen, B. Shaw Jr, and A. Langnas
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HE OUTCOME after intestinal transplantation has improved dramatically since the late 1980s when it first became clinically feasible.1,2 Much of the improvement has occurred due to better immunosuppressive medications.3–5 Generally, the results reported after intestinal transplantation have included information regarding 1- or 2-year mortality and little information exists on the quality of life of these recipients. Of the few reports examining quality of life after intestinal transplantation most describe an assessment of adult recipients or parent proxy reports for pediatric recipients.6 –9 We are unaware of any self-reports from pediatric recipients or any comparison between parental assessments and pediatric self-assessments. We have therefore administered a generic measure of quality of life, the Child Health Questionnaire, to both parents and pediatric recipients of intestinal transplantation. This measure of quality of life was developed specifically to assess children and was previously validated in other patient groups and population norms.10 Here we summarize the results along with a comparison with parental and pediatric normative populations.
RESULTS
The responses of the parents to the CHQ revealed markedly lower function in intestinal transplant recipients in six domains compared with the normative population sample, among these physical function, role limitations due to physical problems, general health perception, emotional and time impact on parents, and negative affect on family activities. Parents reported no significant difference in their child’s level of bodily pain, behavior, mental health, selfesteem, or family cohesion compared with the sample norm. The pediatric recipients, on the other hand, reported no statistically significant difference in any domains compared with the sample norm. There was an overall trend toward parental assessments being lower than the pediatric intestinal transplant recipients, but only the decreased “general health” perception by parents achieved statistical significance. In a comparison of pediatric intestinal transplant recipients to patients with end-stage renal disease there was a general trend toward lower scores in many domains but only one domain, “mental health,” achieved significance. DISCUSSION
METHODS Thirty-three pediatric small bowel transplant recipients over the age of 5 years with intact intestinal allografts and ⬎1-year follow-up after intestinal transplantation were asked to fill out parental and child forms of the Child Health Questionnaire (CHQ). The CHQ is a self-administered questionnaire assessing 14 domains, including global health, physical functioning, limitations to role or social functions (due 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.10 The results are converted to a scale from 0 to 100 with 0 being worst and 100 being best. Twenty-four families (73%) including 24 parents (21 mothers and 3 fathers) and 20 children returned the surveys (4 pediatric recipients were unable to answer all the questions due to autism or age and are not included in the summaries). Intestinal transplant recipients included 11 boys and 13 girls. The mean age of the intestinal transplant recipients was 10.8 ⫾ 3.6 years and these recipients were at a mean of 4.7 ⫾ 2.3 years after transplantation. © 2002 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010 Transplantation Proceedings, 34, 963–964 (2002)
Assessment of health-related quality of life is an evolving field that is receiving increasing attention both within and outside the medical field. This is an area that is particularly difficult in the assessment of pediatric patients. Very young children may be unable to answer questionnaires and differences in assessments between parents as proxy and children can complicate interpretation. Herein we found that parents of intestinal transplant recipients reported limitations in most domains of the CHQ compared with parent reports of children in the general population. Pediatric intestinal transplant recipients, on the other hand, reported little if any impact in most domains compared with other normal school-children. This discrepancy is difficult to interpret. In this sample the mean age of the intestinal From the University of Nebraska Medical Center, Omaha, Nebraska, USA. Address reprint requests to Dr D. Sudan, University of Nebraska Medical Center, Omaha, NE 68198. 0041-1345/02/$–see front matter PII S0041-1345(02)02718-5 963
964
transplant recipients was ⬎10 years old and this would be an age where one would expect a child to reliably answer most of the questions in the questionnaire. It is of interest however that the mean length of time since transplantation was nearly 5 years for these pediatric recipients. This may suggest that these children grew accustomed to whatever differences in life they experienced relative to their peers and no longer found these differences impacting their functioning. Their parents on the other hand may have had a stronger recollection of the pretransplant status and the perioperative complications, possibly leading to lingering concern over their child’s overall well-being. CONCLUSIONS
Parents of intestinal transplant recipients reported significant limitations in the physical and psychosocial well being of their children compared with normal school-children. The intestinal transplant recipients themselves reported a quality of life similar to normal school-children. This discrepancy may be related to the young age of many of the
SUDAN, IYER, HORSLEN ET AL
children at the time of transplantation and the relatively long period of time after transplantation of most of the recipients who responded. REFERENCES 1. Grant D, Wall W, Mimeault R, et al: Lancet 335:181, 1990 2. Goulet OJ, Revillon Y, Cerf-Bensussan N, et al: Transplant Proc 20(suppl 3) 288:, 1988 3. Sudan DL, Kaufman SS, Shaw BW Jr, et al: Am J Gastroenterol 95:1506, 2000 4. Sudan DL, Chinnakotla S, Horslen S, et al: Transplant Proc:, (in press) 5. Horslen S, Torres C, Collier D, et al: Transplant Proc:, (in press) 6. Rovera GM, DiMartini A, Graham TO, et al: Transplant Proc 30:2513, 1998 7. Tarbell SE, Kosmach B: Liver Transplant Surg 4:378, 1998 8. Grant D: Transplantation 67:1061, 1999 9. Sudan DL, Iverson A, Weseman RA, et al: Transplant Proc 32:1211, 2000 10. Landgraf JM, Abetz L, John E, et al: Child Health Questionnaire (CHQ): A User’s Manual, 2nd ed., 1999. Boston: Healthact
T
HE OUTCOME after intestinal transplantation has improved dramatically since the late 1980s when it first became clinically feasible.1,2 Much of the improvement has occurred due to better immunosuppressive medications.3–5 Generally, the results reported after intestinal transplantation have included information regarding 1- or 2-year mortality and little information exists on the quality of life of these recipients. Of the few reports examining quality of life after intestinal transplantation most describe an assessment of adult recipients or parent proxy reports for pediatric recipients.6 –9 We are unaware of any self-reports from pediatric recipients or any comparison between parental assessments and pediatric self-assessments. We have therefore administered a generic measure of quality of life, the Child Health Questionnaire, to both parents and pediatric recipients of intestinal transplantation. This measure of quality of life was developed specifically to assess children and was previously validated in other patient groups and population norms.10 Here we summarize the results along with a comparison with parental and pediatric normative populations.
RESULTS
The responses of the parents to the CHQ revealed markedly lower function in intestinal transplant recipients in six domains compared with the normative population sample, among these physical function, role limitations due to physical problems, general health perception, emotional and time impact on parents, and negative affect on family activities. Parents reported no significant difference in their child’s level of bodily pain, behavior, mental health, selfesteem, or family cohesion compared with the sample norm. The pediatric recipients, on the other hand, reported no statistically significant difference in any domains compared with the sample norm. There was an overall trend toward parental assessments being lower than the pediatric intestinal transplant recipients, but only the decreased “general health” perception by parents achieved statistical significance. In a comparison of pediatric intestinal transplant recipients to patients with end-stage renal disease there was a general trend toward lower scores in many domains but only one domain, “mental health,” achieved significance. DISCUSSION
METHODS Thirty-three pediatric small bowel transplant recipients over the age of 5 years with intact intestinal allografts and ⬎1-year follow-up after intestinal transplantation were asked to fill out parental and child forms of the Child Health Questionnaire (CHQ). The CHQ is a self-administered questionnaire assessing 14 domains, including global health, physical functioning, limitations to role or social functions (due 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.10 The results are converted to a scale from 0 to 100 with 0 being worst and 100 being best. Twenty-four families (73%) including 24 parents (21 mothers and 3 fathers) and 20 children returned the surveys (4 pediatric recipients were unable to answer all the questions due to autism or age and are not included in the summaries). Intestinal transplant recipients included 11 boys and 13 girls. The mean age of the intestinal transplant recipients was 10.8 ⫾ 3.6 years and these recipients were at a mean of 4.7 ⫾ 2.3 years after transplantation. © 2002 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010 Transplantation Proceedings, 34, 963–964 (2002)
Assessment of health-related quality of life is an evolving field that is receiving increasing attention both within and outside the medical field. This is an area that is particularly difficult in the assessment of pediatric patients. Very young children may be unable to answer questionnaires and differences in assessments between parents as proxy and children can complicate interpretation. Herein we found that parents of intestinal transplant recipients reported limitations in most domains of the CHQ compared with parent reports of children in the general population. Pediatric intestinal transplant recipients, on the other hand, reported little if any impact in most domains compared with other normal school-children. This discrepancy is difficult to interpret. In this sample the mean age of the intestinal From the University of Nebraska Medical Center, Omaha, Nebraska, USA. Address reprint requests to Dr D. Sudan, University of Nebraska Medical Center, Omaha, NE 68198. 0041-1345/02/$–see front matter PII S0041-1345(02)02718-5 963
964
transplant recipients was ⬎10 years old and this would be an age where one would expect a child to reliably answer most of the questions in the questionnaire. It is of interest however that the mean length of time since transplantation was nearly 5 years for these pediatric recipients. This may suggest that these children grew accustomed to whatever differences in life they experienced relative to their peers and no longer found these differences impacting their functioning. Their parents on the other hand may have had a stronger recollection of the pretransplant status and the perioperative complications, possibly leading to lingering concern over their child’s overall well-being. CONCLUSIONS
Parents of intestinal transplant recipients reported significant limitations in the physical and psychosocial well being of their children compared with normal school-children. The intestinal transplant recipients themselves reported a quality of life similar to normal school-children. This discrepancy may be related to the young age of many of the
SUDAN, IYER, HORSLEN ET AL
children at the time of transplantation and the relatively long period of time after transplantation of most of the recipients who responded. REFERENCES 1. Grant D, Wall W, Mimeault R, et al: Lancet 335:181, 1990 2. Goulet OJ, Revillon Y, Cerf-Bensussan N, et al: Transplant Proc 20(suppl 3) 288:, 1988 3. Sudan DL, Kaufman SS, Shaw BW Jr, et al: Am J Gastroenterol 95:1506, 2000 4. Sudan DL, Chinnakotla S, Horslen S, et al: Transplant Proc:, (in press) 5. Horslen S, Torres C, Collier D, et al: Transplant Proc:, (in press) 6. Rovera GM, DiMartini A, Graham TO, et al: Transplant Proc 30:2513, 1998 7. Tarbell SE, Kosmach B: Liver Transplant Surg 4:378, 1998 8. Grant D: Transplantation 67:1061, 1999 9. Sudan DL, Iverson A, Weseman RA, et al: Transplant Proc 32:1211, 2000 10. Landgraf JM, Abetz L, John E, et al: Child Health Questionnaire (CHQ): A User’s Manual, 2nd ed., 1999. Boston: Healthact