Adolescent Health-Related Quality of Life Following Liver and Kidney Transplantation

Health perceptions of adolescent transplant patients should be considered in providing appropriate healthcare. Objectives: (i) quantify health-related quality of life (HRQOL) in adolescent liver and kidney transplant patients, (ii) compare caregiver ratings of their children's HRQOL to adolescent self-reports and (iii) examine the relationship between HRQOL and disease-specific disability (DSD). Adolescent liver (n = 51) and kidney (n = 26) transplant recipients and caregivers were surveyed using the CHQ-CF87 and CHQ-PF50. DSD scores were calculated for each patient. The response rate was >70%. Adolescent's psychological and physical health was similar to a healthy population, but general health poorer (p = 0.0006). Caretakers reported lower physical functioning and general health (p = 0.0001) but similar psychological health to a normative population. All caregivers expressed negative emotional impact of their child's health on themselves and family activities (p = 0.0001). Positive correlations were found between liver transplant recipients and caregivers: perceptions of behavior (ICC = 0.55, p < 0.001), mental health (ICC = 0.56, p < 0.001), self-esteem (ICC = 0.68, p ≤0.001). Positive correlations were found for kidney transplant patients and caregivers: physical function (ICC = 0.85, p < 0.001), bodily pain (ICC = 0.70, p < 0.001), behavior (ICC = 0.67, p < 0.01). Kidney transplant recipients showed negative correlations between physical functioning (R =−0.76, p = 0.0003) and general health (R =−0.60, p = 0.008) with overall DSD. Physical and psychological functioning of adolescent liver and kidney transplant patients is high. Caregivers may serve as adequate proxies of psychological but not physical health. Health perceptions of adolescent transplant patients should be considered in providing appropriate healthcare. Objectives: (i) quantify health-related quality of life (HRQOL) in adolescent liver and kidney transplant patients, (ii) compare caregiver ratings of their children's HRQOL to adolescent self-reports and (iii) examine the relationship between HRQOL and disease-specific disability (DSD). Adolescent liver (n = 51) and kidney (n = 26) transplant recipients and caregivers were surveyed using the CHQ-CF87 and CHQ-PF50. DSD scores were calculated for each patient. The response rate was >70%. Adolescent's psychological and physical health was similar to a healthy population, but general health poorer (p = 0.0006). Caretakers reported lower physical functioning and general health (p = 0.0001) but similar psychological health to a normative population. All caregivers expressed negative emotional impact of their child's health on themselves and family activities (p = 0.0001). Positive correlations were found between liver transplant recipients and caregivers: perceptions of behavior (ICC = 0.55, p < 0.001), mental health (ICC = 0.56, p < 0.001), self-esteem (ICC = 0.68, p ≤0.001). Positive correlations were found for kidney transplant patients and caregivers: physical function (ICC = 0.85, p < 0.001), bodily pain (ICC = 0.70, p < 0.001), behavior (ICC = 0.67, p < 0.01). Kidney transplant recipients showed negative correlations between physical functioning (R =−0.76, p = 0.0003) and general health (R =−0.60, p = 0.008) with overall DSD. Physical and psychological functioning of adolescent liver and kidney transplant patients is high. Caregivers may serve as adequate proxies of psychological but not physical health. Adolescents are a unique population of liver and kidney transplant patients, contending with the transition between childhood and young adulthood. It is during this difficult time that these patients also begin to assume responsibility for their own healthcare and become less dependent on their families. Chronic illness may pose unique dilemmas that directly conflict with the adaptive struggles inherent to adolescent growth and development (1Adolescent Medicine, A Practical Guide.in: 2nd edn. Lippincott-Raven, Philadelphia1998Google Scholar, 2Suris JC Michaud PA Viner R The adolescent with a chronic condition. Part I: Developmental issues.Arch Dis Child. 2004; 89: 938-942Crossref PubMed Scopus (332) Google Scholar, 3Burns J The adolescent with a chronic illness.Pediatric Ann. 2006; 35: 207-216Google Scholar). The focus of care in pediatric patients with chronic diseases is being expanded to ensure satisfactory physical, psychological and social wellness for patients (4Bucuvalas JC Britto M Krug S et al.Health-related quality of life in pediatric liver transplant recipients: A single-center study.Liver Transplant. 2003; 9: 62-71Crossref PubMed Scopus (119) Google Scholar, 5Taylor R Franck LS Gibson F Dhawan A A critical review of the health-related quality of life of children and adolescents after liver transplantation.Liver Transplant. 2005; 11 (discussion 7 –9): 51-60Crossref PubMed Scopus (86) Google Scholar, 6Midgley DE Bradlee TA Donohoe C Kent KP Alonso EM Health-related quality of life in long-term survivors of pediatric liver transplantation.Liver Transplant. 2000; 6: 333-339Crossref PubMed Scopus (63) Google Scholar, 7Spieth LE Harris CV Assessment of health-related quality of life in children and adolescents: An integrative review.J Pediatric Psychol. 1996; 21: 175-193Crossref PubMed Scopus (272) Google Scholar, 8Cole CR Bucuvalas JC Hornung RW et al.Impact of liver transplantation on HRQOL in children less than 5 years old.Pediatric Transplant. 2004; 8: 222-227Crossref PubMed Scopus (45) Google Scholar, 9Morel P Almond PS Matas AJ et al.Long-term quality of life after kidney transplantation in childhood.Transplantation. 1991; 52: 47-53Crossref PubMed Scopus (88) Google Scholar, 10Krmar RT Eymann A Ramirez JA Ferraris JR Quality of life after kidney transplantation in children.Transplantation. 1997; 64: 540-541Crossref PubMed Scopus (22) Google Scholar, 11Olausson B Hansson S Wennerstrom M Olausson M Friman S Quality of life after pediatric kidney transplantation: a single-centre experience.Transplant Proc. 2001; 33: 2446-2448Crossref PubMed Scopus (11) Google Scholar). This broadened perspective, which includes attention to health-related quality of life (HRQOL), is particularly important in adolescent transplant patients, in whom the psychosocial, emotional and biologic arenas are inherently intermingled. Historically, researchers have relied on parental reports of HRQOL in order to reach the broadest age range and because of an inherent misconception that parents are more ‘reliable’ reporters. Focusing exclusively on either parent or child self-reports could result in the loss of valuable information (12Landgraf JM Measuring health-related quality of life in pediatric oncology patients: a brief commentary on the state of the art of measurement and application (discussion).Int J Cancer Suppl [Journal International du Cancer]. 1999; 12: 147-150Crossref PubMed Google Scholar). The adolescent’s unique position in the transition zone between childhood and adulthood renders such reports from either parent or child even more susceptible to potential misinterpretation. Studies of adolescent patients with a broad range of chronic illnesses indicate that parents may report a greater impact of illness on the functioning of their children than the children themselves (13Sawyer M Antoniou G Toogood I Rice M A comparison of parent and adolescent reports describing the health-related quality of life of adolescents treated for cancer.Int J Cancer Suppl. 1999; 12: 39-45Crossref PubMed Google Scholar, 14Levi RB Drotar D Health-related quality of life in childhood cancer: Discrepancy in parent–child reports.Int J Cancer Suppl. 1999; 12: 58-64Crossref PubMed Google Scholar, 15Wake M Hesketh K Cameron F The Child Health Questionnaire in children with diabetes: Cross-sectional survey of parent and adolescent-reported functional health status.Diabet Med. 2000; 17: 700-707Crossref PubMed Scopus (107) Google Scholar, 16Cunningham JM Chiu EJ Landgraf JM Gliklich RE The health impact of chronic recurrent rhinosinusitis in children.Arch Otolaryngol Head Neck Surg. 2000; 126: 1363-1368Crossref PubMed Scopus (125) Google Scholar, 17Powers PM Gerstle R Lapey A Adolescents with reports of adolescent health-related quality of life and in 2001; PubMed Scopus Google Scholar, D K et of life in patients with and their is important PubMed Scopus Google Scholar). in the of HRQOL may also be in adolescent transplant functional in transplant recipients is A critical review of the on HRQOL in children after liver transplant that overall functional is R Franck LS Gibson F Dhawan A A critical review of the health-related quality of life of children and adolescents after liver transplantation.Liver Transplant. 2005; 11 (discussion 7 –9): 51-60Crossref PubMed Scopus (86) Google Scholar). This that have their in the of that not the psychological social family function and general to adequate HRQOL in liver transplant recipients the age of 5 years (4Bucuvalas JC Britto M Krug S et al.Health-related quality of life in pediatric liver transplant recipients: A single-center study.Liver Transplant. 2003; 9: 62-71Crossref PubMed Scopus (119) Google EM K C et of pediatric liver 2003; PubMed Scopus Google Scholar). from in scores for physical function and general health parental emotional impact and impact on family parental reports of A of HRQOL in transplantation a of adolescent kidney transplant child this overall HRQOL after transplantation as similar to patients expressed their and M J C Health-related quality of life after transplantation in 1997; Google Scholar). et kidney transplant patients age using parent and child reports and found their overall functioning to be of patients, with and with lower overall HRQOL M et and quality of life after transplantation in Transplant. 2004; 8: PubMed Scopus Google Scholar). the of family function and general A of the impact of liver and kidney transplantation on HRQOL from child and using that the to quality of life is the of this were to quantify the HRQOL in adolescent liver and kidney transplant patients and compare to a healthy population and to compare caregiver ratings of their HRQOL with adolescent self-reports after liver and kidney A of this was to examine the relationship between HRQOL and disease-specific disability in adolescent liver and kidney transplant of patients were for the The of liver transplant for in the long-term between and The of patients of kidney transplant for between and The for the the of the liver and kidney transplant The was the to potential years were care after a liver or kidney transplant during the time was to the of the as of in their patients with as and patients care in the to the were patients were because was that their functional be their disability and could not be to the population. 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All patients as the or but as as were to this overall scores indicate of The Child Health Questionnaire is a and JM The Scholar). a child and caregiver of the are and have in normative as as children with a of chronic diseases (13Sawyer M Antoniou G Toogood I Rice M A comparison of parent and adolescent reports describing the health-related quality of life of adolescents treated for cancer.Int J Cancer Suppl. 1999; 12: 39-45Crossref PubMed Google PM Gerstle R Lapey A Adolescents with reports of adolescent health-related quality of life and in 2001; PubMed Scopus Google M M Hesketh The health and of adolescents: A population of the Child Health 2001; PubMed Scopus (86) Google JM and of children self-reports using the 1997; 12: Scopus Google Scholar). and physical to physical bodily general to mental health and The physical functioning physical to health-related The in activities and activities with in physical health. 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The parental impact time the in time because of a The family activities the of of family activities and the family family are with a a quality of the and the have and The to a population of children in this as the comparison for adolescent children were with an age of 10Krmar RT Eymann A Ramirez JA Ferraris JR Quality of life after kidney transplantation in children.Transplantation. 1997; 64: 540-541Crossref PubMed Scopus (22) Google Scholar, 11Olausson B Hansson S Wennerstrom M Olausson M Friman S Quality of life after pediatric kidney transplantation: a single-centre experience.Transplant Proc. 2001; 33: 2446-2448Crossref PubMed Scopus (11) Google Scholar, JM Measuring health-related quality of life in pediatric oncology patients: a brief commentary on the state of the art of measurement and application (discussion).Int J Cancer Suppl [Journal International du Cancer]. 1999; 12: 147-150Crossref PubMed Google Scholar, M Antoniou G Toogood I Rice M A comparison of parent and adolescent reports describing the health-related quality of life of adolescents treated for cancer.Int J Cancer Suppl. 1999; 12: 39-45Crossref PubMed Google Scholar, 14Levi RB Drotar D Health-related quality of life in childhood cancer: Discrepancy in parent–child reports.Int J Cancer Suppl. 1999; 12: 58-64Crossref PubMed Google Scholar, 15Wake M Hesketh K Cameron F The Child Health Questionnaire in children with diabetes: Cross-sectional survey of parent and adolescent-reported functional health status.Diabet Med. 2000; 17: 700-707Crossref PubMed Scopus (107) Google JM and of children self-reports using the 1997; 12: Scopus Google Scholar). 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Adolescent liver transplant recipients reported their physical and psychological function as similar to a healthy population Adolescent kidney transplant recipients also their quality of with the of general as similar to the healthy population. The caregivers of the general health of their children as poorer than the normative population. This was similar to in a more of liver transplant patients (4Bucuvalas JC Britto M Krug S et al.Health-related quality of life in pediatric liver transplant recipients: A single-center study.Liver Transplant. 2003; 9: 62-71Crossref PubMed Scopus (119) Google EM K C et of pediatric liver 2003; PubMed Scopus Google Scholar). This may the on the parents of for a child with a chronic and impact their of the Caregivers of adolescent liver and kidney transplant recipients also their physical function as than the general population. of their psychological being was similar to the normative population. It was that the functional of their caregivers were their Caregivers reported more emotional and of family activities than the normative population. the that of adolescent transplant recipients may social even years after the transplant Adolescents and caregivers in transplant to have similar perceptions of the psychological quality of that their after transplant was and similar to a normative population. 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The in physical health and being the of the of child and indicate that parents of transplant recipients may serve as adequate proxies of but not physical health. are similar for correlations using the and the is as the between parent and quality of life in adolescent patients also that parent and child reports are not of quality of being in a child and adolescent PubMed Scopus Google Scholar). This that from the child or the caregiver may result in loss of valuable information that could impact are to the an adolescent’s quality of life and information should be as an that the adolescent’s The of even the in of potential not correlations between overall DSD and quality of life in the liver transplant population A of the patients were with The of an range of in DSD may have to this the relationship between and quality of life in patients with and liver also not correlations EM K C et of pediatric liver 2003; PubMed Scopus Google M EJ A in adolescent PubMed Scopus Google Scholar). 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