The original Gleason grading system devised in the 1960s assigned architectural patterns into five groups [1]. The most common and second most common were combined into a score ranging from 1 + 1 = 2 to 5 + 5 = 10. There have since been several modifications to the Gleason grading system, resulting in a significant grade migration. Currently, the lowest score is a Gleason 6, and it has been suggested that this may make patient counseling difficult and reduce the uptake of active surveillance (AS), as it may not sound like “low-grade” disease [2].
Epstein et al. [3] recently proposed an alternative system using grade groups (GGs) 1–5, indicating Gleason 6, 3 + 4, 4 + 3, 8, and 9–10, respectively. Although the new GGs have been validated to predict biochemical recurrence [4], to our knowledge no study has explored patient preferences about Gleason grading and whether the new GGs actually increase patient comfort with AS. With the adoption of these GGs by the World Health Organization and the International Society of Urological Pathology [5], an understanding of patient perceptions is essential. Overall, patient perspectives on Gleason grading have received little study to date. A systematic PubMed search on "qualitative" or "focus groups" AND "Gleason" or "prostate cancer grade" yielded 102 unique results. After excluding based on title (n = 100) and full-text review (n = 2), we found no qualitative data on patients’ impressions of Gleason grading.
We conducted seven focus groups with prostate cancer patients from two clinical settings between October 2015 and March 2016, as part of a larger qualitative study on AS. Prostate cancer patients undergoing AS were identified through the electronic health records, and a total of 235 were mailed invitations. Overall, 37 patients with a median age of 66 years (65% white, 30% black, 5% other) participated in focus groups, which included discussion of Gleason scoring. Recruitment stopped when thematic saturation was reached (no new themes emerged). Focus groups were recorded and transcribed verbatim. Transcripts were coded, and NVivo software (QSR International, Doncaster, Australia) was used for organization and further analysis. Following the focus groups, 25 patients (68%) voluntarily completed an additional survey on Gleason scoring, including four questions using a four-point Likert scale and one free-text response field (Supplemental Table 1).
Although most prostate cancer patients were familiar with the concept of a Gleason score, there was general consensus that traditional Gleason scoring is confusing. Multiple participants expressed difficulty understanding what their scores mean (Figure 1). The overwhelming majority (84%) agreed or strongly agreed that it would be clearer if the Gleason score was on a scale of 1–5, instead of 6–10. Only a few patients disagreed with the new GG (Figure 1). Overall, 88% would prefer to hear they had GG 1 versus Gleason 6, and 80% agreed or strongly agreed that they would feel more comfortable doing AS with GG 1 versus Gleason 6.
Fig. 1.
Quotes from prostate cancer patient focus groups about traditional Gleason grading and the new grade groups.
In this paper, we provided the first qualitative assessment of the new GG in US prostate cancer patients. While this is a relatively small sample, it affirms that Gleason grading is a significant source of confusion for patients and that most men prefer the revised GG system.
Supplementary Material
Acknowledgments
This work was supported by the Laura and Issac Perlmutter Cancer Center, New York University (P30CA016087)); the Louis Feil Charitable Lead Trust; and the National Cancer Institute, National Institutes of Health (K07CA178258). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Abbreviations
- AS
active surveillance
- GG
grade groups
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