The mental toll of organ transplant on children and families

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Solid organ transplant is a life-saving surgery that offers renewed hope to children living with severe chronic illnesses such as advanced kidney disease, heart disease and liver disease. However, transplant is a very intense procedure that can also take a mental toll on patients and their families – the effects of which have been vastly understudied.

With the aim of addressing this knowledge gap, a team of researchers at BC Children’s Hospital conducted mental health assessments of pediatric patients following a solid organ transplant (kidney, heart or liver). Their work yielded novel insights into the relationships between transplant and depression, anxiety and post-traumatic stress symptoms. The findings, published February 2022 in Pediatric Transplantation, explore ways to better support pediatric transplant patients and their families.

“Kids receiving a transplant, they really have survived a lot in their young lives, and many of them have accumulated repeated traumatic exposures related to their previous medical experiences,” explains Dr. Tom Blydt-Hansen, researcher and director of the multi-organ transplant program at BC Children’s, who was involved in the study. “These are kids that have had bloodwork done on a monthly basis, other tests and procedures to manage organ failure, and some of them have been very unwell.”

Goal is earlier intervention

Dr. Blydt-Hansen’s team, which included researcher and psychologist Dr. Erika Penner, was interested in identifying the factors that contribute to improved quality of life among some of their patients, in the hopes of implementing earlier interventions. They have conducted several studies over the years, including a series evaluating quality of life that showed post-traumatic stress symptoms were highly linked to lower quality of life.

In their more recent study, they conducted mental health assessments of 56 patients between the ages of seven and 20 who received a solid organ transplant, as well as surveys of their family members.

The results show that a small percent of children in the study exhibited clinical signs of depression, at five per cent. However, a substantially larger portion of patients exhibited symptoms of post-traumatic stress after their transplant, almost one in four, and girls were particularly likely to score higher in terms of these symptoms.

Children with transplants reported lower quality of life

Dr. Blydt-Hansen notes the prevalence of depression was lower than what one might expect. “On the flip side, post-traumatic stress symptoms were more common than what we honestly would have predicted. And those symptoms are probably present in parents and siblings as well.”

Importantly, even patients who only exhibited a few symptoms of post-traumatic stress and didn’t meet the clinical threshold of diagnosis still tended to report lower quality of life scores. Dr. Blydt-Hansen says his team plans to further investigate the underlying risk factors for post-traumatic stress in a subsequent study with funding from the Canadian Donation and Transplantation Research Program and the Transplant Research Foundation of BC. The goal is to ultimately offer patients better and more timely mental health interventions and improve outcomes.

“The key is trying to get children with transplants access to mental health services not just when they’re in crisis, but as early as possible in the process to prevent them from experiencing a crisis in the first place,” says Dr. Blydt-Hansen.

Adapted from BC Renal web story.

BCCHR Communications
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