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Introduction¹

Transplantation of a solid organ, such as a kidney, heart, or liver, is a lifesaving procedure and is sometimes the only viable treatment for patients experiencing end-stage organ failure as a result of illness or injury. A growing prevalence of solid organ diseases in the United States is contributing to an increasing number of people needing a transplant and longer wait times on the national transplant waiting list. New scientific knowledge and technologies are showing improved survival rates and other benefits to patients, giving reason for optimism. However, while transplantation can lengthen a person’s life, the road to recovery is difficult and complex. While some transplant recipients are able to return to a more active life, others experience greater functional limitations due to health factors, medication side effects, organ rejection, or other setbacks, making it difficult for adults to return to work and for children to do well developmentally and across various domains of functioning.

To gain an understanding of current scientific findings in the field of solid organ transplantation, the U.S. Social Security Administration (SSA)

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¹ The planning committee’s role was limited to planning the workshop, and the Proceedings of a Workshop was prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants and are not necessarily endorsed or verified by the National Academies of Sciences, Engineering, and Medicine, and they should not be construed as reflecting any group consensus.

asked the National Academies of Sciences, Engineering, and Medicine’s (the National Academies’) Board on Health Care Services to organize a virtual public workshop to examine disability associated with organ transplantation. As part of its charge, SSA asked the National Academies to focus on the functional outcomes for adults and children who are solid organ transplant recipients and to facilitate discussions related to the following topics:

• Processes conducted to identify transplant recipients with the highest probability of positive posttransplantation outcomes;
• Current outcome measures for assessing effectiveness of care for individuals who have undergone organ transplantation (e.g., morbidity and mortality);
• Treatments used to improve a person’s physical or mental functioning following organ transplantation and the settings in which the treatments are provided;
• The typical length of time from transplant surgery until the person’s functioning improves to the point of which their condition is no longer disabling, and specific ages or other recipient traits where improvement is more likely;
• Laboratory or other findings used to assess medical and functional improvement after organ transplant; and
• Recent medical advances or new technologies that may improve expected patient outcomes, and potential advances anticipated in the near future.

The workshop focused on kidney, heart, liver, and lung transplantation, and to a lesser extent, intestine transplantation. The workshop planning committee invited subject-matter experts to present on important aspects of posttransplantation recovery and functioning in adults and children. The workshop was held virtually on March 22–23, 2021. This Proceedings of a Workshop describes the speakers’ presentations and the moderated panel discussions, which included panelists’ responses to questions from SSA staff in the audience and from the general public.

PURPOSE OF THE WORKSHOP

In the opening remarks, Sara Rosenbaum, professor of health law and policy at The George Washington University and chair of the workshop planning committee, described the purpose of the workshop as trans-

lational. As SSA is tasked with the responsibility of translating medical knowledge into policies and practices when evaluating disability claims, she explained, it needs the most current and comprehensive research to do so. This exploration can also help it understand what organ transplantation recovery looks like in comparison to recovery from other conditions that lead to functional limitations and to place organ transplantation recovery within the broader context of the SSA disability program.

From SSA, Gina Clemons, associate commissioner of the Office of Disability Policy, and Vincent Nibali, policy analyst for the Office of Medical Policy, explained the reasons for the workshop and gave a brief overview of the disability process. Clemons stated that the information addressed by the workshop is needed to help SSA ensure that its criteria for evaluating disability claims of organ transplant recipients are up to date with new scientific findings in the field. She said SSA is interested in information about the nature of recovery after transplantation and the different ways that disability may persist. For example, a patient may have recovered from a transplant but continues to experience side effects from treatment or comorbid conditions. Clemons said that knowing how these issues can manifest when both evaluating and re-evaluating patient functional status will help SSA make more informed decisions on disability benefits.

Nibali stated that Congress defines disability in adults as “the inability to engage in substantial gainful activity by reason of a medically determinable physical or mental impairment or combination of impairments, which is expected to last for a continuous period of not less than 12 months or result in death”² and in children as “marked and severe functional limitations.” When SSA determines if a claimant is disabled based on the severity of functional limitations, it compares those functional limitations with the current medical criteria³ that apply to its evaluation of impairments. Thus, Nibali explained, it is crucial that SSA has a complete and comprehensive

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² The definition of disability is described in Section 223(d)(1) of the Social Security Act as an “inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months, or in the case of an individual who has attained the age of 55 and is blind (within the meaning of blindness as defined in section 216(i)(1)), inability by reason of such blindness to engage in substantial gainful activity requiring skills or abilities comparable to those of any gainful activity in which the individual has previously engaged with some regularity and over a substantial period of time” (Social Security Act, 42 U.S.C. § 423(d)).

³ SSA refers to these medical criteria as the Listing of Impairments.

understanding of the criteria that may constitute functional impairment in organ transplant recipients to ensure they meet the threshold for benefits.

ORGANIZATION OF THE PROCEEDINGS

This proceedings is organized into six chapters. Following the introduction, Chapter 2 presents an overview of solid organ transplantation in the United States and experiences of patients and caregivers. Chapter 3 covers the various types of transplantation in adults and ways to assess functioning, while Chapter 4 focuses on the pediatric and adolescent transplant population. Various treatments and technologies that can affect functioning are discussed in Chapter 5; and finally, Chapter 6 reflects on the presentations and provides commentary on potential future implications for the solid organ transplant field. Appendix A includes the Statement of Task for the workshop. Appendixes B and C provide the workshop agenda and short biographical sketches of the workshop planning committee members and speakers, respectively. The speakers’ presentations and the webcast have been archived online.⁴

Box 1-1 summarizes key points from speakers and participants during the workshop.

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⁴ See https://www.nationalacademies.org/event/03-22-2021/the-state-of-the-science-on-organ-transplantation-and-disability-a-workshop-part-1 (accessed May 6, 2021).