A renal disease diagnosis is “a shock at any age”, and its “huge impact” on the lives of patients and their families is something that takes time to process. Doctors should engage better with patients and help to talk them through the experience—that was the message from Vivian Papageorgiou, a patient representative at the recent Endo Vascular Access (EVA) Meeting (23–24 June, Patras, Greece) who spoke to Nicholas Inston (Queen Elizabeth Hospital Birmingham, Birmingham, UK) to describe her experience of kidney disease and the host of treatment modalities she has undergone. The patient experience was also painted vividly by Phil West in conversation with Ounali Jaffer (Royal London Hospital, London, UK).
Papageorgiou’s journey with kidney disease, which has encompassed pre-dialysis care, dialysis, and multiple kidney transplantations, began at age 23 with a diagnosis of IgA nephropathy. Drawing on that experience, Papageorgiou, asked what could have improved it, said: “As patients, we understand that doctors have little to no time to sit down and connect individually with each and every patient, but I do believe that just a few moments of their time would have a very positive impact on the patient’s outlook and mental wellbeing during this tumultuous time.
“Firstly, [it would help] to take the time to explain to them exactly what is happening to their bodies and why—should there be a clear diagnosis—and then to be presented with their possible treatment options in a way that would best suit each patient given their background and lifestyle.”
She added that “graphs and statistics are black and white, but you need to talk to patients about how best to fit a treatment into their lives. Connect mentally with patients, because what they are going through is shocking—every time. It is not easy for anyone,” she said.
Speaking elsewhere to Renal Interventions, Papageorgiou expanded on her personal experience. “The fact that it happened at a very young age made it especially difficult for me to process. Everything had to happen very quickly to ‘fix it’ […] and when you are not given that time, it affects you mentally.
“I wish medicine could find a better way to do dialysis—to give [patients] fewer restrictions, let them be able to travel, to just make them feel better in between sessions. It is a lifeline, but what kind of life is that?”
On her experience at EVA, she was upbeat. “Coming in, I was not exactly sure how [the physicians attending] would feel about me being sentimental and talking about the mental impact. But I am glad that I did—I see that the response was great, and I hope that it does help them in the long term to help others feel more understood.”
Another patient representative who featured as a speaker at EVA 2023 was West, who spoke to Jaffer on his 27-year experience living with chronic kidney disease (CKD). After an initial IgA nephropathy diagnosis in 1996, he said, he received a kidney transplant that year. He has also undergone both in-centre and home haemodialysis.
West highlighted the comorbidities associated with his diagnosis and treatment, including heart disease and a triple heart bypass, skin cancer from immunosuppressants, and bone disease from calcification breakdown. Jaffer noted that, given the frequent focus on kidney disease itself, these accompanying conditions were sometimes apportioned less consideration.
“It is a long journey,” West said. Echoing Papageorgiou’s comments on CKD’s mental impact, he said: “Not only [because of] those physical conditions, but the mental aspects as well. It can be very tiring—there is a lot to do, particularly if you do home dialysis, for you and for your family. I have a fantastic support team behind me, but the thing that stands out for me now is the mental factor. I would like, if possible, to see more support and understanding for this part of the disease.”
Jaffer concurred, adding that it is particularly important for physicians to understand how kidney disease “consumes your life”. He described the difficulties for patients of learning how to “carry on” and integrate the condition and its treatment into the rest of their life, and asked West what more physicians could do to make the patient interaction and pathway easier.
In an echo of Papageorgiou’s message, West suggested: “Get to know your patient. We appreciate that you are all very busy, but that personal connection [is important]. We are all different, with different backgrounds, but if you can get to know your patient and they can get to know you, in a professional manner, it can only make the journey easier for both.”
The doctor’s perspective was similar, with Jaffer concluding that building relationships is also beneficial for physicians. When that connection is established, he stated finally, “we learn a lot more”.