Exploring the State of the Science of
SOLID ORGAN TRANSPLANTATION
AND DISABILITY
PROCEEDINGS OF A WORKSHOP
Laura Aiuppa Denning, Megan Snair, and Ruth Cooper,
Rapporteurs
Board on Health Care Services
Health and Medicine Division
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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This activity was supported by a contract between the National Academy of Sciences and the U.S. Social Security Administration. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-68336-4
International Standard Book Number-10: 0-309-68336-X
Digital Object Identifier: https://doi.org/10.17226/26213
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2021. Exploring the state of the science of solid organ transplantation and disability: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26213.
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PLANNING COMMITTEE ON THE STATE OF THE SCIENCE OF SOLID ORGAN TRANSPLANTATION AND DISABILITY1
SARA ROSENBAUM (Chair), Harold and Jane Hirsh Professor, Health Law and Policy, Milken Institute School of Public Health, The George Washington University
JAMES BOWMAN, Physician, Division of Transplantation, Health Resources and Services Administration, U.S. Department of Health and Human Services
JOHN A. GOSS, Professor of Surgery, Michael E. DeBakey Department of Surgery; Chief, Division of Abdominal Transplantation, Baylor College of Medicine
PAUL L. KIMMEL, Senior Advisor, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health
ERIKA D. LEASE, Medical Director, UW Lung Transplant Program; Associate Professor, Division of Pulmonary, Critical Care and Sleep Medicine; Attending Physician, Solid Organ Transplant Infectious Disease Program, University of Washington
GEORGE V. MAZARIEGOS, Chief, Pediatric Transplantation, Hillman Center for Pediatric Transplantation; Jamie Lee Curtis Endowed Chair in Transplantation Surgery, Professor of Surgery and Critical Care, University of Pittsburgh Medical Center Children’s Hospital of Pittsburgh
MELISSA McQUEEN, Executive Director, Transplant Families
SHARI S. ROGAL, Assistant Professor of Medicine and Transplant Surgery, University of Pittsburgh; Physician, VA Pittsburgh Healthcare System
DORRY SEGEV, Marjory K. and Thomas Pozefsky Professor of Surgery and Epidemiology; Associate Vice Chair of Surgery; Director, Epidemiology Research Group in Organ Transplantation, Johns Hopkins University
HANNAH VALANTINE, Professor of Medicine, Division of Cardiovascular Medicine, Stanford University
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
Health and Medicine Division Staff
LAURA AIUPPA DENNING, Senior Program Officer
RUTH COOPER, Research Associate (from January 2021)
CYNDI TRANG, Research Associate (until March 2021)
RUKSHANA GUPTA, Senior Program Assistant
SHARYL NASS, Senior Director, Board on Health Care Services
JULIE WILTSHIRE, Senior Financial Business Partner
Consultant
MEGAN SNAIR, Consulting Writer
Reviewers
This Proceedings of a Workshop was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.
We thank the following individuals for their review of this proceedings:
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by KENNETH W. KIZER, Atlas Research. He was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the
National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.
Acknowledgments
The National Academies of Sciences, Engineering, and Medicine’s Board on Health Care Services wishes to express its sincere gratitude to the planning committee chair, Sara Rosenbaum, for her valuable contributions to the development and orchestration of this workshop. The board also wishes to thank all of the members of the planning committee, who collaborated to ensure a workshop replete with informative presentations and moderated rich discussions. Finally, the board wants to thank the speakers, who generously shared their expertise and their time with workshop participants. Funding from the U.S. Social Security Administration made this workshop possible. Research assistance was provided by Christopher Lao-Scott, Senior Librarian, National Academies.
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Contents
Organization of the Proceedings
Overview of the Solid Organ Transplantation System
Disparities in Transplantation Recovery and Survival
Perspectives from Organ Recipients and Their Caregivers
3 ORGAN TRANSPLANTATION AND DISABILITY IN ADULTS
Clinical Conditions and Consequences for Health and Function
Assessing Physical, Cognitive, and Psychosocial Function in Adults After Organ Transplantation
4 ORGAN TRANSPLANTATION AND DISABILITY IN CHILDREN AND ADOLESCENTS
Clinical Conditions and Consequences for Health and Function
Adolescent Transitions to Adulthood After Transplantation
Assessing Physical, Cognitive, and Psychosocial Function After Organ Transplantation in Children
5 TREATMENTS, TECHNOLOGIES, AND INTERVENTIONS AFFECTING FUNCTION AFTER TRANSPLANTATION
Pharmacologic Treatments After Transplantation
Rehabilitation After Transplantation
6 FUTURE OUTLOOK FOR ORGAN TRANSPLANTATION AND DISABILITY
COVID-19-Related Concerns for Transplant Patients
Emerging Technologies to Watch
C BIOGRAPHICAL SKETCHES OF WORKSHOP PLANNING COMMITTEE MEMBERS AND SPEAKERS
Boxes, Figures, and Table
BOXES
1-1 Key Points by Individual Speakers and Participants
3-1 Interventions for Clinicians to Assist Recipients in Return to Work
5-1 Definition of Palliative Care
5-2 Elements of Palliative Care and Common Outcomes
FIGURES
2-1 Levels of racism relevant to each level of the social ecology
3-1 Summary of contributing factors leading to frailty
4-1 Hierarchy of outcome measures
4-2 Pediatric liver transplantation across three tiers of outcomes
4-3 Pediatric intestine transplantation across three tiers of outcomes
4-4 Functional status of surviving pediatric lung transplant recipients
TABLE
Acronyms and Abbreviations
CF | cystic fibrosis |
CHD | congenital heart disease |
CKD | chronic kidney disease |
CLAD | chronic lung allograft dysfunction |
CMV | cytomegalovirus |
COPD | chronic obstructive pulmonary disease |
EPTS | estimated posttransplant survival score |
ESRD | end-stage renal disease |
HCV | hepatitis C virus |
ICU | intensive care unit |
JHU | Johns Hopkins University |
KDPI | kidney donor profile index |
KDRI | kidney donor risk index |
MELD | model for end-stage liver disease |
MRI | magnetic resonance imaging |
OPTN | Organ Procurement and Transplantation Network |
PedsQL | Pediatric Quality of Life Inventory Tool |
PKD | polycystic kidney disease |
PTSD | posttraumatic stress disorder |
SRTR | Scientific Registry of Transplant Recipients |
SSA | U.S. Social Security Administration |
UNOS | United Network for Organ Sharing |
QOL | quality of life |