Abstract
BackgroundThe effect of a kidney transplant on a recipient extends beyond the restoration of kidney function. However, there is limited qualitative analysis of recipient perspectives on life following transplantation, particularly in the United States. To understand the full patient experience, it is necessary to understand recipient views on life adjustments after kidney transplantation, medical management, and quality of life. This could lead to improvements in recipient care and sense of well-being.MethodsWe conducted a paper-based survey from March 23 to October 1, 2015 of 476 kidney transplant recipients at the University of Michigan Health System in Ann Arbor, Michigan. We analyzed their open-ended responses using qualitative research methods. This is a companion analysis to a previous quantitative report on the closed-ended responses to that survey.ResultsCommon themes relating to changes following transplantation included: improvements in quality of life, a return to normalcy, better health and more energy. Concerns included: duration of graft survival, fears about one day returning to dialysis or needing to undergo another kidney transplant, comorbidities, future quality of life, and the cost and quality of their healthcare. Many recipients were grateful for their transplant, but some were anxious about the burdens transplantation placed on their loved ones.ConclusionsWhile most recipients reported meaningful improvements in health and lifestyle after kidney transplantation, a minority of participants experienced declines in energy or health status. Worries about how long the transplant will function, future health, and cost and quality of healthcare are prevalent. Future research could study the effects of providing additional information, programs, and interventions following transplantation that target these concerns. This may better prepare and support kidney recipients and lead to improvements in the patient experience.
Highlights
The effect of a kidney transplant on a recipient extends beyond the restoration of kidney function
Participants in the survey were older, transplanted more recently, more likely to be male and have received a living unrelated donor transplant compared to the University of Michigan (UM) kidney transplant population that met eligibility for the study
A lack of response does not imply that the patient agreed or did not agree with a theme. In this follow-on study, we use qualitative methods to analyze the perspectives of kidney transplant recipients about their current experiences and future concerns
Summary
The effect of a kidney transplant on a recipient extends beyond the restoration of kidney function. To understand the full patient experience, it is necessary to understand recipient views on life adjustments after kidney transplantation, medical management, and quality of life This could lead to improvements in recipient care and sense of well-being. Tucker et al BMC Nephrology (2019) 20:175 the return to normalcy, and Orr et al who used focus groups to understand quality of life [4, 5] They found that recipients define a normal life in a variety of ways and reported common themes of fear, gratitude, and a medicalization of their lives. Howell et al used focus-nominal groups to study trade-offs between outcomes associated with immunosuppression [6] They found that patients would rather experience severe treatment-related adverse events than lose their grafts, thereby illuminating the importance of understanding and including the patient perspective in clinical decision-making. Experiences and interactions with healthcare systems may be strongly affected by the context of care, especially as it relates to cost and support systems
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