Quality of Life

Quality of life (QOL) is a multi-dimensional concept that refers to an individual’s usual or expected physical, emotional, and social well-being. 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 areas of interest include:

  • Health-related quality of life assessment for kidney donors and recipients
  • Health-related quality of life assessment for liver donors and recipients
  • Functional Outcomes in Pediatric Liver Transplant Recipients
  • Outcomes in Patients in the Second Decade Following Pediatric Liver Transplantation
  • Studies of Pediatric Liver Transplantation (SPLIT) Research Consortia
  • Neurocognitive Function and HRQOL in Patients in the Pediatric Acute Liver Failure Research Consortium

TEAM LEADERS

Estella M Alonso, MD
  • Professor
    Pediatrics
  • Medical Director
    Liver Transplant Program Siragusa Transplant Center, Children’s Memorial Hospital
  • Chair
    Quality of Life
Zeeshan Butt, PhD
  • Associate Professor
    Medical Social Sciences and Surgery
    Center for Healthcare Studies
  • Chair
    Quality of Life

COLLABORATORS

David Cella, PhD
Susan Yount, PhD
Sally Jensen, PhD

Archives

10 MOST RECENT PUBLICATIONS

  • Dew MA, DiMartini AF, Ladner DP, Simpson MA, Pomfret EA, Gillespie BW, Merion RM, Zee J, Smith AR, Holtzman S, Sherker AH, Weinrieb R, Fisher RA, Emond JC, Freise CE, Burton JR Jr, Butt Z.Psychosocial Outcomes 3 to 10 Years After Donation in the Adult to Adult Living Donor Liver Transplantation Cohort Study. Transplantation. 2016 Jun;100(6):1257-69
  • Wang L, Apple AC, Schroeder MP, Ryals AJ, Voss JL, Gitelman D, Sweet JJ, Butt ZA, Cella D, Wagner LI. Reduced prefrontal activation during working and long-term memory tasks and impaired patient-reported cognition among cancer survivors postchemotherapy compared with healthy controls. Cancer. 2016 Jan 15;122(2):258-68.
  • Kuntz K, Weinland SR, Butt Z. Psychosocial Challenges in Solid Organ Transplantation. J Clin Psychol Med Settings. 2015 Sep;22(2-3):122-35.
  • Butt Z. Solid Organ Transplantation: An Introduction to the Special Section. J Clin Psychol Med Settings. 2015 Sep;22(2-3):111-2.
  • Waterman AD, Morgievich M, Cohen DJ, Butt Z, Chakkera HA, Lindower C, Hays RE, Hiller JM, Lentine KL, Matas AJ, Poggio ED, Rees MA, Rodrigue JR, LaPointe Rudow D; American Society of Transplantation. Living Donor Kidney Transplantation: Improving Education Outside of Transplant Centers about Live Donor Transplantation–Recommendations from a Consensus Conference. Clin J Am Soc Nephrol. 2015 Sep 4;10(9):1659-69.
  • Parikh ND, Skaro AI, Ladner DP, Lyuksemburg V, Cahan JG, Daud A, Butt Z. Clinical outcomes and quality of life in recipients of livers donated after cardiac death. Gastroenterol Res Pract. 2015.
  • DiMartini AF, Dew MA, Butt Z, Simpson MA, Ladner DP, Smith AR, Hill-Callahan P, Gillespie BW Patterns and predictors of sexual function after liver donation: The Adult-to-Adult Living Donor Liver Transplantation Cohort study. Liver Transpl. 2015 May;21(5):670-82.
  • Heldman MR, Sohn MW, Gordon EJ, Butt Z, Mohammed S, Alonso EM, Levitsky J. National survey of adult transplant hepatologists on the pediatric-to-adult care transition after liver transplantation.Liver Transpl. 2015 Feb;21(2):213-23.
  • Ladner DP, Dew MA, Forney S, Gillespie BW, Brown RS Jr, Merion RM, Freise CE, Hayashi PH, Hong JC, Ashworth A, Berg CL, Burton JR Jr, Shaked A, Butt Z. Long-term quality of life after liver donation in the adult to adult living donor liver transplantation cohort study (A2ALL). J Hepatol. 2015 Feb;62(2):346-53.
  • Jensen SE, Butt Z, Heinemann AW, Magasi S, Cella D, Kuiken TA, Dumanian GA. Perceptions of the risks and benefits of upper limb transplantation among individuals with upper limb amputations. Plast Reconstr Surg. 2014 Nov;134(5):979-87.

10 MOST RECENT NATIONAL PRESENTATIONS

  • Mohammad S, Sundaram S, Venkat V, Martinez M, Lopez J, Magee J, et al., editors. Changes In Health Related Quality Of Life In Pediatric Liver Transplant Recipients During Protocolized Immunosuppression Withdrawal. American Transplant Congress; 2015; Philadelphia, PA.
  • Jensen SE, Butt Z, Heinemann AW, Cella D, Kuiken T, Dumanian GA, editors. Adjustment to Amputation and Attitudes Toward Upper Limb Transplantation: Implications for Patient Selection. American Association for Hand Surgery 2014 January Kauai, HI.
  • Jensen SE, Butt Z, Heinemann AW, Cella D, Kuiken T, Dumanian GA, editors. Perceptions of Upper Limb Transplantation Benefits and Risks: The Amputee Perspective American Association for Hand Surgery; 2014 January Kauai, HI.
  • Heldman M, Gordon E, Sohn MW, Butt Z, Mohammad S, Alonso E, et al., editors. Adult Transplant Hepatologists’ Perceptions of the Transition from Pediatric to Adult Care: A National Survey. World Transplant Congress; 2014; San Francisco, California
  • Dew MA, Butt Z, DiMartini A, Ladner D, Simpson MA, editors. Psychosocial Outcomes 3 to 9 Years After Living Liver Donation in the Adult to Adult Living Donor Liver Transplantation Cohort Study (A2ALL). American Transplant Congress; 2013; Seattle, WA.
  • Butt Z, Mallick R, Mulcahy M, Benson A, Cella D, Kaiser K, editors. Pain and Other Symptoms in Patients with Hepatocellular Carcinoma (HCC): A Qualitative Analysis American Society of Clinical Oncology 2013 June; Chicago, IL.
  • Butt Z, Lai JS, Beaumont J, Kaiser K, Mallick R, Cella D, et al., editors. Psychometric Properties of a Brief, Clinically-Relavant Measure of Pain in Patients with Hepatocellular Carcinoma International Society for Quality of Life Research; 2013 October Miami, FL.
  • Butt Z, editor. The Importance of Assessing Quality of Life in Outcomes Research. American Transplant Congress; 2013; Seattle, WA.
  • Parikh ND, Skaro AI, Beaumont JL, Rosenbloom SK, Cella D, editors. Development and Validation of a Symptom Index for Advanced Hepatobiliary Cancers: The NCCN-FACT Hepatobiliary Symptom Index. Digestive Disease Week 2012; San Diego, CA.
  • Parikh N, editor. The Effect of Donor-Recipient Age Difference on Outcomes After Liver Transplant. American Association for the Study of Liver Diseases; 2012; Boston, MA.
  • Mohammad S, Hormaza L, Neighbors K, Boone P, Azzam R, Butt Z. Quality of Life and Health Status in Young Adults Two Decades after Pediatric Liver Transplantation. American Transplant Congress; 2011; Philadelphia, PA.