Table 2 Familiarity with LS and engagement with surveillance recommendations (patient [N = 12]; provider [N = 10])
Familiarity key findings | Exemplar quotes |
Patients • All (12) received education about LS and needed surveillance activities from a genetic counselor • 83% (10) easily described the types of surveillance recommendations but were less able to always articulate screening time interval | “They (genetic counselor) gave me all the information on the risk for colon cancer and additional cancers like of the stomach and bladder.” – male “So we have the combinations blood, CBC plus kidney functions. We do the internal ultrasound and transvaginal ultrasound, and then we do colonoscopies. And the endoscopy is recommended but that one is just not on my radar screen [as to when].” – female |
Providers • All had heard of LS and generally understood these patients have an increased risk for colon cancer and need more frequent colonoscopy screening • 70% (7) were much less familiar with specific surveillance recommendations, while 3 described greater detailed understanding and knowledge | “I know that it is a genetic condition making people susceptible to getting polyps that turn into cancer and that it can happen at a young age – so they need to be found and monitored.” – IM PCP “On a scale of 1-10, I would say a 2 or 3 [in knowledge] as we learned about it and most of us know of it better as HNPCC…so for screenings that are required, obviously regular GI scoping.” – FM PCP “… I don’t know the recommendations quite frankly.” – IM PCP “I would say my familiarity is fair when compared to other generalists. I know it is an autosomal dominant mutation, mismatched repair genes, if I recall correctly and it is responsible, I believe, for [an increased rate] of colorectal cancer...” IM PCP |
Engagement key findings | Exemplar quotes |
Patients • Most described engagement with colonoscopy (10) and endoscopy (8) every 1-2 years • About half described engagement with other recommendations like urine cytology and bloodwork (e.g. kidney/liver screening) • One female obtains transvaginal ultrasound every 1-2 years with 7 others reporting total hysterectomies | “I’ve had colonoscopy exams about every 2 years and endoscope down the throat exams at the same time.” – male “I’ve done colonoscopy every year, or sometimes I push it out to 15 months, I think that is the furthest I ever went out with it.” – female “And I also [do] bladder, abdominal ultrasound exams and another urine exam every couple of years…” – male “I scheduled the appointment with the OB/GYN right away to talk with her about the hysterectomy. I knew that is what I wanted.” – female |
Providers • 70% (7) providers viewed LS as an infrequently encountered condition recalling only 1 patient on their large care panels • 3 providers with 2-4 identified patients on their care panel described regular engagement with family history documentation and follow up conversations | “I don’t have a lot of knowledge or experience with it at all… I think I just have one patient that I know of with Lynch syndrome and she told that she was diagnosed with that… I mean it is such a rare thing, you don’t come across it that often.” - IM PCP “I don’t know a lot about Lynch Syndrome. I mean it is always something I have to look up…” - IM PCP “I do know about it. I have a number of patients on my practice who have LS…I take a three-generation family history on every patient…if you have those clusters of cancers then I’m going to think maybe you have a familial cancer syndrome.” – FM PCP |