Kidney transplant evaluation process deemed ‘rigid, demanding’
A thematic analysis of health records revealed the current system for kidney transplant evaluation is “rigid and demanding,” leading researchers to conclude work must be done to individualize the process and make it more collaborative.
“Previous studies describing the transplant process have focused on the factors and outcomes associated with referral, waiting list inclusion, and receipt of a kidney transplant, and on patients’ experiences with particular aspects of the transplant process,” Catherine R. Butler, MD, MA, of the division of nephrology department of medicine at University of Washington, and colleagues wrote. “To our knowledge, few previous studies have described how the entire process of referral, evaluation and selection for kidney transplant proceeds in real-world clinical settings.
A more complete understanding of this process could help to improve the quality of care for patients and families, guide process improvement, and support public discussion about strategies to promote fair allocation of donor kidneys.”
For the study, researchers reviewed the electronic health records of 211 US veterans with advanced kidney disease who were referred for kidney transplant evaluation.
A qualitative analysis was then conducted to identify specific themes related to the process, from which emerged: far-reaching and inflexible medical evaluation; psychosocial valuation; surveillance over compliance; and disempowerment and lack of transparency.
The researchers described “far-reaching and inflexible medical evaluation” as related to the fact clinicians often sought to determine patients’ entire medical history and identify undiagnosed conditions. This led to multiple clinical visits and “invasive procedures,” with no account taken the patient’s specific circumstances or priorities, according to the researchers.
“The need for frequent testing and interaction with the health care system during the transplant evaluation process could be overwhelming and emotionally burdensome for some patients and families,” they added. “Setbacks or deviations from expectations in the evaluation process were sometimes associated with depression and even suicidal ideation.”
Regarding the second theme, Butler and colleagues indicated that the interviews conducted as part of psychosocial assessments could “stray” into personal matters leading patients to feel judged and trust.
“Documentation in medical records suggested that patients’ awareness of clinicians’ conflicting obligations to advocate for them while also being required to report potentially compromising information to the transplant center could stifle honest communication and undermine trust,” the researchers . “Referral letters to the transplant center sometimes conveyed a moral tone alluding to whether patients were deserving of transplant.”
Surveillance over compliance was, according to the researchers, another area which candidacy.
“The extent to which a patient adhered to treatment recommendations could be viewed by clinicians as an indication of the patient’s level of motivation to receive a kidney transplant and as a ‘litmus test’ for how the patient would fare after transplant”
Finally, of the last theme, the researchers noted that patients were often “disempowered” as transplant seemed like the only option when compared with dialysis. Further, patients, family member and local clinicians were “often unsure about what to expect during the evaluation process or about the rationale for selection decisions.”
Butler and colleagues contended these findings suggest there are opportunities to improve the evaluation process for patients, an essential component of to make it more “person-centered.”
“There is general agreement that this process should strive to uphold patients’ goals, values and preferences to the greatest extent possible,” they wrote. “More open communication and collaboration between the transplant center and patients’ local medical centers could also allow for greater transparency and flexibility in the evaluation process. A collaborative approach could empower local clinicians to individualize the evaluation process within established parameters to accommodate the needs and circumstances of individual patients and families.”