The authors utilized data from an international survey generated by KCCure, a non-profit patient advocacy group. Individuals with a history of kidney cancer were recruited to participate in the survey via social media (e.g., Twitter, Facebook) between July and September 2019. The survey included questions related to demographic and clinical characteristics, histology, stage, surveillance intervals, imaging modalities, and distress (1-item measure, ranging from 0 to 10, cutoff of 4). Kruskal-Wallis test was used to compare anxiety prior to surveillance scans with distress as a continuous variable.
A total of 1150 kidney cancer survivors participated in the survey. Of these, 412 were diagnosed with localized disease (56% stage 1, 19% stage 2, and 24% stage 3), with a median time since diagnosis of 18 months. 32% of patients had a biopsy prior to their surgery.
Notably, 18% did not have a clear understanding of their diagnosis and did not feel confident about a plan going forward.
Understanding of the disease characteristics was even lower with 42% who do not know their T-stage, 22% who do not know their grade and 8% who do not know their histological subtype. Perhaps as a result of this uncertainty, 34% were seeking a second opinion following surgery.
As may be expected for patients with different underlying disease characteristics, follow-up intensity varied with follow-up every three months in 30%, every six months in 43%, annually in 22%, bi-annually in 2% of the patients. Follow-up imaging utilized CT scan with contrast in 74%, CT scan without contrast in 31%, MRI in 23%, chest x-ray in 33%, PET scans in 4%, and ultrasound in 18% of the patients. 2% did not receive any radiological scans.
40 percent of patients experienced increased anxiety for a week or more prior to surveillance scans, 34 percent experienced increased anxiety for a few days prior to scans and 12 percent experienced increased anxiety for one day prior to scans. 13 percent reported no increased anxiety. Anxiety was significantly increased to 6.1 on the NCCN distress scale compared to 4.8 at baseline (p>0.001).
These critical data highlight that many patients with kidney cancer lack important information regarding their diagnosis. Even for those without active evidence of disease, pending surveillance scans are associated with significant anxiety. These data highlight the importance of appropriate communication with patients both prior to and following treatment.
Presented by: Dena Battle, President, KCCure, Alexandria, VA
Written by: Christopher J.D. Wallis, Urologic Oncology Fellow, Vanderbilt University Medical Center, @WallisCJD on Twitter at the 2020 American Urological Association (AUA) Annual Meeting, Virtual Experience #AUA20, June 27- 28, 2020
Watch: Patient Advocacy and Resources in Kidney Cancer - Dena Battle
Watch: Kidney Cancer Patient Survey Findings: Impacts from the COVID-19 Pandemic - Dena Battle