Exploring the State of the Science of Solid Organ Transplantation and Disability Proceedings of a Workshop (2021) / Chapter Skim
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1 Introduction
1 Introduction
Pages 1-10
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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.
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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.
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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 2 The definition of disability is described in Section 223(d)
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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.
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• Children who are transitioning to adult-focused care are highly at risk of adverse outcomes, yet fewer than half of these special needs patients, including pediatric transplant recipients, receive adequate support and services for that transition. (Diaz-Gonzalez de Ferris)
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Clinical and Functional Outcomes in Adults • Some major factors affecting transplant outcomes include etiology, age, pretransplant status, underlying conditions and comorbidities, frailty, exercise capacity, medical contraindications, and donor factors. (Conrad, Lease, Rogal, Segev, Valantine)
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• P harmacological strategies to improve functioning include limiting corticosteroids, recognizing and treating mental health disorders, regulating levels of anti-rejection medications, and monitoring long term for hypertension, diabetes, and malignancy. (Mohammad)
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• Compared to adults with end-stage kidney disease, children with this disease fare much better and have 10-year survival rates of 85–90 percent. (Diaz-Gonzalez de Ferris)
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(Mohammad) • Rehabilitation and physical therapy help pediatric lung transplant patients achieve normal activities in their lives, including school, sports, and good physical, social, and mental health outcomes.
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• Targeted culturally and cognitively appropriate patient edu cation and engagement interventions can lead to improved health care transitions and self-management among ado lescents. (Diaz-Gonzalez de Ferris, A
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