Small changes to follow-up care could produce big benefits for people who have had surgery for kidney cancer, according to the first in-depth study of patient experience after surgery for kidney cancer.
The research explored the experiences and perspectives of people who had had surgery for kidney cancer in two online focus groups, providing a vivid glimpse into the fears and hopes of kidney cancer patients and how they felt about the care they had received after their surgery.
Most participants felt that their physical needs had been met but many had struggled with unmet emotional needs and a lack of information and resources.
“I suppose I find the surgical teams and the oncology teams they are medical fixers and they do that… but the gaps around the emotional support and how you cope with that…I have had a mixture of emotions where I’ve been at a very dark place and there are days when I’m very positive.”
The period immediately after surgery was especially difficult, and feelings of abandonment were common. One person expressed the feeling:
…at the time I just sort of felt sort of tossed into the wilderness after my operation..”
People in this patient group often feel very anxious about the cancer recurring. ‘Scanxiety’, or anxiety around appointments and results, had affected almost all participants, linked to uncertainty about scheduling and long waits for results.
“And for the two weeks or three weeks afterwards [after the scan] you are left thinking any time that phone rings it is going to be an oncologist telling me it [cancer] is back.”
People also described concerns about the lack of consistency among different hospitals around the United Kingdom, and differences in the content and quality of follow-up care.
“…because there’s a real disparity from one end of the United Kingdom to the other in terms of what we get as after care..”
Researcher Dr Hannah Harrison said: ‘Together, our findings suggest that the follow-up care experience is variable and for many patients could be improved. Based on the experiences of the participants, we have developed a list of recommendations to address some of the challenges described, through relatively minor changes to the care pathway’.
Providing clear information on ‘life with one kidney’, a personalised follow-up care plan and realistic expectations around the timing of follow-up scans are just some of the actions that would help patients.
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Professor Grant Stewart, part of the research team and Chair of the Getting It Right First Time (GIRFT) Academy for kidney cancer, said: ‘This new understanding of the experiences and wishes of patients after surgery for kidney cancer has led directly to new guidance around the best way to follow-up our patients after their initial surgery. We hope that, via the GIRFT, the strategies suggested will be adopted across the UK to benefit all kidney cancer patients.’
Dr Harrison will be presenting this work at the International Kidney Cancer Symposium (IKCS2023) which is taking place on the 21st -22nd of April in Edinburgh.
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Hannah Harrison, Grant D. Stewart, Juliet A. Usher-Smith. Patient experience of follow-up after surgery for kidney cancer: a focus group study. First published: 01 February 2023. https://doi.org/10.1111/bju.15982
Patient representatives: Andrew Fear, Richard Jetten
Image: Centre for Ageing Better