Quality of life (QOL) is a multi-dimensional concept that refers to an individual’s usual or expected physical, emotional, and social well-being. Similarly, health-related QOL refers to the subjective experience and well-being of a patient as impacted by a medical condition or its treatment, often assessed by the patient’s self-report using standardized questionnaires. At its broadest, QOL encompasses not only disease symptoms and functional consequences, but also more subjective domains such as life satisfaction, happiness, and the value that one places on life at any given time. Notably, such patient-reported outcomes are increasingly becoming emphasized in clinical trials in other areas of medicine. With increased rates of survival for many child and adult transplant populations, there is an increasing focus on the QOL of both organ recipients and live organ donors. Formal, systematic QOL assessment of patients can serve as a useful gauge of treatment success, assist in the identification of long term complications that should continue to be monitored by medical personnel, or identify potential teaching and learning moments where health promotion interventions could be implemented. The QOL Workgroup consists of collaborative group of NU investigators from the Division of Organ Transplantation, Department of Pediatrics, Department of Medical Social Sciences, Department of Medicine, and the Institute for Healthcare Studies.

Leaders

Estella M Alonso , MD Professor, Pediatrics Northwestern University, Feinberg School of Medicine Siragusa Transplant Center Children’s Memorial Hospital ealonso@childrensmemorial.org

Zeeshan Butt , PhD Research Assistant Professor, Medical Social Sciences and Surgery Northwestern University Feinberg School of Medicine z-butt@northwestern.edu

Recent Publications
Alonso EM. Growth and developmental considerations in pediatric liver transplantation. Liver Transplantation 2008;14:585-591. 

Alonso EM, Neighbors K, Barton FB, McDiarmid SV, Dunn SP, Mazariegos GV, Landgraf JM, Bucuvalas JC and the SPLIT Research Group. Health related quality of life and family function following pediatric liver transplantation.  Liver Transplantation 2008;14:460-468. 

Bucuvalas JC, Alonso E, Magee JC, Talwalker J, Hanto D, Doo E. Improving long-term outcomes after liver transplantation in children. Am J Transplant 2008;8:2506-13. 

Butt Z, Yount SE, Caicedo JC, Abecassis MM, Cella D. Quality of life assessment in renal transplant: review and future directions. Clin Transplant. 2008;22(3):292-303. 

Sundaram SS, Alonso EM, Anand R. Outcomes Following Liver Transplantation in Young Infants.  J Pediatr Gastroenterol Nutr 2008;47:486-492.

Petroski R, Rodgers S, Sullivan C, Grady K, Backer CL, Pahl E. Quality of life in adult survivors 10+ years post pediatric heart transplantation. J Heart Lung Transplant 2009;28(7):661-666.

Jay CL, Butt Z, Ladner DP, Skaro AI, Abecassis MM. A review of quality of life instruments used in liver transplantation. J Hepatol 2009; 51(5):949-59.

Recent and Upcoming Presentations
Alonso EM. Long-term quality of life for pediatric transplant recipients. Early Morning Workshop presented at the American Transplant Congress, 2008; Toronto, ON.

Petroski R, Rodgers S, Sullivan C, Grady K, Backer CL, Pahl E.  Quality of life in adult survivors 10+ years post pediatric heart transplantation. Presented at the International Society for Heart and Lung Transplantation, 2008; Boston, MA.

Sorenson LG, Neighbors K, Marts K, Zelko F, Bucuvalas JC, Alonso EM. Intellectual and academic outcomes following pediatric liver transplantation – preliminary results of the Functional Outcomes Group. Paper presented at the American Association for the Study of Liver Diseases, 2008; San Francisco, CA.

Beauvais N, Jay C, Butt Z, Skaro A, Caicedo JC, Daud A, Salvaggio P, Ladner D, Abecassis M. A preliminary cross-sectional study of protective factors of quality of life after liver transplantation. Poster presented at the American Transplant Congress, 2009; Boston, MA.

Butt Z, Caicedo JC, Gil S, Jensen S, Cella D, Abecassis M. A psychometric comparison of two patient-reported outcome (PRO) tools for use in kidney transplantation. Poster presented at the American Transplant Congress, 2009; Boston, MA.

Ho B, Butt Z, Ladner D, Caicedo J, Abecassis M. Poor association between quality of life and renal function in kidney transplantation. Poster presented at the American Transplant Congress, 2009; Boston, MA. (Poster of Distinction Award)

Butt Z, Tu F, Jensen SE, Beaumont JL, Bode R, Langan J, Webster KA, Cella D. Reliability and validity of the Surgical Outcomes Measurement System (SOMS). Poster presented at the Clinical Congress of the American College of Surgeons, 2009; Chicago, IL.

Butt Z, Jensen SE, Daud A, Sprague A, Friedewald JJ. What is the quality of life impact of living donor nephrectomy? Poster presented at the American Society of Nephrology, 2009; San Diego, CA.

Ladner DP, Lyuksemburg V, Kang R, Ross OA, Butt Z. A cross-sectional study of liver-specific quality of life following transplantation. Poster presented at the annual meeting of the American Association for the Study of Liver Diseases, 2009; Boston, MA.

Alonso EM, Martz K, Webb T, Yi M, Neighbors K, Bucuvalas JC, Varni JW. Social and medical factors predict health-related quality of life (HRQOL) in pediatric liver transplant recipients in the SPLIT Functional Outcomes Group (FOG) cohort. Poster presented at the annual meeting of the American Association for the Study of Liver Diseases, 2009; Boston, MA.

Alonso EM. Long-term outcomes of adult and pediatric liver transplantation. AASLD/ILTS Transplant Course, 2009; Boston, MA.