Exploring the State of the Science of Solid Organ Transplantation and Disability Proceedings of a Workshop (2021) / Chapter Skim
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4 Organ Transplantation and Disability in Children and Adolescents
4 Organ Transplantation and Disability in Children and Adolescents
Pages 43-62
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From page 43... ...
This is followed by summaries of the Session 5B presentations and discussions in which speakers focused on physical, cognitive, and psychosocial functioning in children after organ transplantation, as well as the specific challenges that adolescents face. CLINICAL CONDITIONS AND CONSEQUENCES FOR HEALTH AND FUNCTION Session 2 speakers presented clinical overviews of liver and intestine, kidney, lung, and heart transplants in children and adolescents that highlighted the causes of the end-stage organ disease, methods for estimating posttransplant survival, and statistics on survival and recovery outcomes across various groups.
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From page 44... ...
To help understand how liver and intestine transplants may be similar or different, Mazariegos discussed what diseases lead to transplantation in children. For those requiring a liver transplant, the most common conditions are chronic liver disease and metabolic or genetic conditions, which together account for more than 50 percent of the indications for p ediatric 1 Technical variant techniques use a partial liver graft to replace the role of a whole organ.
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From page 45... ...
ORGAN TRANSPLANTATION IN CHILDREN AND ADOLESCENTS 45 FIGURE 4-1 Hierarchy of outcome measures. SOURCES: George Mazariegos presentation, March 22, 2021; Porter, 2010.
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From page 46... ...
But in some children with metabolic disease, the ongoing systemic condition may not allow a complete return to normal even after transplantation, highlighting the ongoing systemic effect of the metabolic complications. In terms of long-term outcomes, Mazariegos explained that liver transplant recipients fare significantly better than patients requiring intestine transplants.
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From page 47... ...
While most of the 10-year survivors had achieved most of the measures, only about one-third achieved all 13 of them. Marzariegos stated he believes liver and intestine transplants are best evaluated through an outcomes hierarchy to identify the distinct challenges children face through the transplant journey, as their cycle of care is measured in decades compared to years for adults.
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From page 48... ...
Diaz-Gonzalez de Ferris cautioned that when adolescent patients with chronic conditions are not prepared to self-manage their care as adults, they can experience adverse effects, including transplant rejection, death, graft loss, higher hemoglobin A1C scores in diabetics, and increased arthritis activity. Reporting findings from a study that measured transition readiness among adolescents and young adults (Zhong et al., 2018)
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From page 49... ...
Conrad emphasized that optimal physical function and condition before lung transplantation contributes to better outcomes. She referenced studies in both pediatric and adult candidates that demonstrate that rehabilitation exercises before transplantation can lead to an improved exercise activity level and increase in the 6-minute walk distance (Castleberry et al., 2017)
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From page 50... ...
Conrad explained that by 3 years after transplantation, nearly 80 percent of recipients reported normal function, and another 10 percent were active but tired easily. Conrad suggested pediatric lung transplant recipients would likely benefit from a directed treatment rehabilitation exercise program to achieve their best functionality and QOL.
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(N = 253) FIGURE 4-4 Functional status of surviving pediatric lung transplant recipients.
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From page 52... ...
Chin described a number of clinical consequences pediatric patients may experience after heart transplantation. He said many patients develop kidney disease and described risk factors for the development of kidney disease this include preexisting disease, effects of surgery and hospitalization, use of anti-rejection medications, and age at transplant.
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From page 53... ...
Chin noted that compared to the 2,500 certified adult cardiac rehabilitation programs in the United States, there are just 10–15 certified pediatric programs. Currently, he said, pediatric heart transplant patients are set up to be deconditioned and less active, which leads to a weak foundation as they transition to adulthood.
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From page 54... ...
Gupta also highlighted a study from her center that found increased mortality in children who transferred from pediatric to adult care: one in four young adult liver transplant recipients died after that transition, and she noted that African Americans constituted the majority of these (Katz et al., 2021)
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From page 55... ...
He began by asking the panelists what might contribute to the differences between adult and pediatric survival rates among the various end-organ groups and why some organs show much better pediatric survival when others may even be worse than adult rates. Diaz-Gonzalez de Ferris responded in the context of kidney transplant patients, saying that 10-year posttransplant survival is actually greater for children than adults, but the reason is not completely clear.
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For example, drug screenings may be able to help determine whether a patient is following recommended medication regimens.
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From page 57... ...
A panel discussion further explored the topic of impairments following an organ transplant that can lead to disability in children. Physical and Cognitive Functioning Compared to adults, children are transplanted early in life and may have other congenital diseases that cause impairment, but they tend to be quite resilient, said Saeed Mohammad, medical director of pediatric hepatology and liver transplantation at the Northwestern University Feinberg School of Medicine.
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A separate study of heart transplant patients compared those with CHD to those who had a failing heart. Despite all of them having been transplant recipients at a very young age, the patients with CHD scored lower (Urschel et al., 2018)
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Emphasizing that that cognitive impairment is an important concern in children, Shemesh said that a large percentage of pediatric transplant patients have schooling difficulties. Based on his research -- mainly on a liver transplant prospective child cohort assessed 1 year after transplant -- Shemesh indicated that psychosocial demographic challenges were top predictors of risk.
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From page 60... ...
That provider also may not be well versed in the specific challenges transplant recipients face, which might include PTSD from hospitalization, difficulty adhering to medication regimens, or the vulnerability that may come from being different from other children. This is definitely an area that could benefit from more easily accessible resources, he stated.
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From page 61... ...
One thing about adult transplantation programs, said Lease, is that they do not have the same structure or resources built into them as the pediatric programs do. She asked for suggestions for adult transplantation programs that are now taking care of pediatric patients who have transitioned into their care.
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From page 62... ...
Mohammad said that overall outcomes for pediatric patients are very good for liver, kidney, and heart transplants. They likely need close monitoring, and some will require more support, but he believed it is something that can be overcome for them to live a fairly normal life.
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