Title
Experience of Older Adults and Their Family Members in the Kidney Transplant Evaluation
First Author:
Kate Butler, MD MA
Dr. Butler is an Assistant Professor of Medicine and Health Services Researcher at the KRI and VA Center of Innovation. Her research focused on improving person-centeredness for older adults with kidney disease. She is mentored by Ann O’Hare MD MA.
About
43% of adults in the US with kidney failure are 65 years or older. Kidney transplant can be a valuable treatment option, but to receive a kidney, patients must successfully complete what is often an extensive evaluation and selection process. Older adults tend to have more limited life expectancy and a greater number and severity of comorbid conditions that often require a more extensive evaluation and most will not ultimately receive a kidney. In this context, it is especially important to understand what the kidney transplant evaluation is like for older adults and whether there are opportunities to better support these patients in making decisions.
In this qualitative study of 26 adults aged 65 years or older with advanced kidney disease and 7 of their family members, participants emphasized that receiving a kidney was an important priority and most were willing to engage in what could be a demanding process of testing and treatment. However, the transplant evaluation could be lengthy, demanding, opaque, and fragmented, and patients often put other aspects of their lives on hold while awaiting an uncertain result. Patients and families often felt personally responsible for navigating and completing the transplant evaluation despite having little power to shape this process.
A disease-based and future-oriented approach to the transplant evaluation process can conflict with core principles of geriatric care, and can sometimes obligate patients to an extended and iterative course of screening and treatment that did not always support other health or life goals. More work is needed to make the kidney transplant evaluation process more transparent and person-centered and to help older adults and their family members understand what to expect as they contemplate or engage in this process.
Example quotations from participants:
“Always my choices in treatment were to preserve the ability to have a transplant. Everything in the last 5 years was geared toward maintaining the ability to have a transplant.”
“He waits, he waits…,‘Oh, well…we’ve discovered that you have prostate cancer.’ And that has to be treated… then ‘Oh, because of the bleeding, we can’t keep you on the list, that has to be treated first.’ …He’s basically put, in his own words, put his life on hold…The fact that he was finally told [that] the transplant board rejected transplant, actually, it gave him a little bit of relief… like, okay, now I have to move on with my life.”
"The transplant coordinator]got upset with me and said, ‘You guys are not serious. So there’s no point to do anything about it because I’m going to cancel this appointment.’ So that’s where the frustration came and I was so powerless”
“You feel like you have a bit of a parachute, but you don’t know exactly if that parachute’s going to work when you pull the chord…. How the gears are working in the background to where you’re at and how your name’s going to get pulled.”
Author Information
Butler CR, GaughranO, Taylor JS, Gee PO, O’Hare AM
Publication
JAMA Internal Medicine
Published online ahead of print | December 16, 2024