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

ACRONYMS AND ABBREVIATIONS

1 INTRODUCTION

Purpose of the Workshop

Organization of the Proceedings

2 SOLID ORGAN TRANSPLANTATION IN THE UNITED STATES AND THE EXPERIENCES OF ORGAN RECIPIENTS AND THEIR CAREGIVERS

Overview of the Solid Organ Transplantation System

Disparities in Transplantation Recovery and Survival

Perspectives from Organ Recipients and Their Caregivers

Discussion

3 ORGAN TRANSPLANTATION AND DISABILITY IN ADULTS

Clinical Conditions and Consequences for Health and Function

Discussion

Assessing Physical, Cognitive, and Psychosocial Function in Adults After Organ Transplantation

Discussion

4 ORGAN TRANSPLANTATION AND DISABILITY IN CHILDREN AND ADOLESCENTS

Clinical Conditions and Consequences for Health and Function

Adolescent Transitions to Adulthood After Transplantation

Discussion

Assessing Physical, Cognitive, and Psychosocial Function After Organ Transplantation in Children

Discussion

5 TREATMENTS, TECHNOLOGIES, AND INTERVENTIONS AFFECTING FUNCTION AFTER TRANSPLANTATION

Pretransplant Care Management

Pharmacologic Treatments After Transplantation

Rehabilitation After Transplantation

Palliative Care

Discussion

6 FUTURE OUTLOOK FOR ORGAN TRANSPLANTATION AND DISABILITY

COVID-19-Related Concerns for Transplant Patients

Emerging Technologies to Watch

Final Thoughts

REFERENCES

APPENDIXES

A STATEMENT OF TASK

B WORKSHOP AGENDA

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

2-2 Factors that influence disparities in access to care and quality of health care services, by level

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

5-1 Three components of the strength training interventions for liver transplant patients based on the Information-Motivation-Behavioral Skills conception model for modifying individual health behaviors

5-2 Brain function and metabolism in patients with long-term tacrolimus therapy after kidney transplantation compared to patients after liver transplantation and healthy controls

TABLE

2-1 Percent Patient and Graft Survival, Return to Work, and Quality of Life (QOL) 1 Year After Transplantation by Organ Type

Acronyms and Abbreviations