A qualitative exploration of the patient disease and treatment burden of end stage renal failure, Post-Renal transplantation and antibody mediated rejection (AMR).

Background: End stage renal disease (ESRD) is the irreversible decline in an individual's kidney function. In severe cases it can be fatal if dialysis or transplantation is not sought. Renal transplantation is associated with longer life expectancies and improved quality of life and is often the preferred treatment over chronic dialysis for those with ESRD. After kidney transplant, patients are at risk of infections, and complications such as allograft rejection. Antibody mediated rejection (AMR) is one of the most common causes of allograft failure. There is currently no approved medication for the prevention or treatment of AMR after transplantation. Whereas the patient-reported symptoms and impacts of ESRD and of kidney transplant have been widely documented, a paucity of these data specific to the population at high risk of or with active AMR is evident.

Methods: We conducted qualitative interviews and analysis with 14 patients with ESRD on the waiting list for a kidney transplant, and 19 patients who had received a kidney transplant (patients post-transplant without AMR (n = 12), and patients post-transplant at high risk of or with active AMR (n = 7)).

Results: A total of 52 symptoms and 69 impacts were reported across the populations with ESRD and post-transplant. New concepts emerged from the interviews that had not been reported in previous literature. The patients with AMR in our study reported mostly negative symptoms but continued to experience many benefits of transplant such as increased energy, an absence of dry or itching skin, an absence of urological and neuropathic symptoms and fewer symptoms overall. Negative impacts were most often related to emotional, physical, and social functioning, and positive impacts most frequently reported for overall health, activities of daily living and quality of life. Patients post-transplant both with and without AMR reported improvements in quality of life compared to before their transplant. However, although patients with AMR reported a number of positive impacts, fewer were mentioned, and less frequently than by patients post-transplant without AMR; a return to normalcy, increased social interaction, and improved diet and lifestyle are all examples of this. Our research allowed the development of a conceptual disease model specific to patients with AMR.

Conclusion: The qualitative exploration of patient experience of symptoms and impacts carried out in our study underlines the heterogeneity of experience and the burden of disease and treatment experienced by patients at all stages of disease and treatment, from ESRD, to AMR of the kidney transplant. Eliciting these data directly from patients, analyzing and presenting these concepts in conceptual disease models is an essential step towards relevant and accurate measurement of patient experience in these populations.