Background
Methods
Background and study site
Recruitment and participants
Data collection and analysis
Results
Patient and provider description (Table 1)
PATIENTS (N = 12) | Number | |
Gender | Female | 9 |
Male | 3 | |
Average Age in Years | 57 | |
Age Range | 34-77 | |
Average Years as KPNWa Member | 17 | |
Membership Years Range | 1.5-30 | |
Diagnosed with LSb in KPNW | 10 | |
Initiation/Seeking of LS Diagnosis | LS testing after CRCc/Ovarian Cancer | 7 |
Initiated LS testing due to family member | 5 | |
Average Years since LS Diagnosis | 5 | |
Years since Diagnosis Range | 2-10 | |
PROVIDERS (N = 10) | Number | |
Gender | Female | 5 |
Male | 5 | |
Specialty Practice | Internal Medicine (IM) | 6 |
Family Medicine (FM) | 3 | |
Obstetrics/ Gynecology (Obgyn) | 1 | |
Average Years at KPNW | 13 | |
Years at KPNW Range | 3-30 | |
Average # of Patients on Care Panel | 1800 | |
# of Patients on Panel Range | 1450-2000 | |
# of LS Patients on Care Panel | Only one | 7 |
Two - four | 3 |
Familiarity with LS and engagement with screening recommendations (Table 2)
Patients
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 |
Providers
Approach to and support with surveillance recommendations (Table 3)
Patients
Monitoring and support key findings | Exemplar quotes |
Patients • Two-thirds (8) relied on a combination of their own tracking and some type of reminder prompting from a provider • One-third (4) relied solely on their own efforts to track and complete surveillance activities • 58% (7) had not returned to genetic counselors or communicated again with specialists since their LS identification regarding surveillance recommendations | “The surgeon’s office does a really good job of reminding me when I need to do my colonoscopy - he’ll say it needs to be repeated in 6 or 12 months and I will write it on my calendar.” – male “I watch it myself for the colonoscopy. Then my PCP reminds me to go in for urine cytology check and set up for the abdominal ultrasound.” – male “I can keep track… I don’t know that I’ve gotten reminder letters about a specific test…” – female “I haven’t actually returned to the genetics department. I didn’t even think about it.” – female |
Providers • 80% (8) described relying heavily on their patient and/or specialists (GI, genetic counselors) to be the experts on surveillance • 5 relied solely on specialty providers to actively monitor and follow up on their identified LS patients’ surveillance needs • 5 others described more of a partnership working with specialist departments to track, monitor, and send reminders to their identified LS participants regarding surveillance needs | “She [patient] is incredibly proactive and very educated. So she’s taking care of herself, essentially. She has a GI that she sees regularly. She really doesn’t need anything from me, because she’s so on top of it…” – IM PCP “I don’t do much… they are all followed [by] GI pretty much.” - FM PCP “…that [tracking and reminding] is done through the genetics department…” – IM PCP “I’m trying to remember to review that with them and make sure they’re doing their follow-up. And it helps to have the system [specialists] working on your side too.” - IM PCP “…between [patient], GI and myself, we kind of tack it – anything the GI indicates I document in the problem list so I can easily find it again later when she is due. So we work together as a team.” – FM PCP |
Providers
Facilitators and barriers to care coordination and receipt (Table 4)
Patients
Facilitators to surveillance key findings | Exemplar quotes |
Patients • Overall, all felt well-supported by the health system regarding their LS related care (diagnosis, education, surveillance) • 58% (7) were particularly satisfied with the support received from the genetics department regarding communication with and education of identified patients’ family members • 42% (5) cited having comprehensive health insurance with minimal co-payments as relieving potential financial burden of the frequent surveillance activities | “I’ve been really pleased so far because everything has been so open and shared within one medical record…and I know I’m being proactive with the help of a good medical team I have in place. It is not questioned anymore about why I’m doing the tests [e.g. frequent colonoscopy] that I’m doing.” – female “People in the genetics department were very helpful helping me help my daughter find people [to screen for LS], because she is outside the system.” – female “It really makes me humble I have this wonderful insurance. I don’t know how [other] people out there pay for these procedures – that would be a challenge.” – female |
Providers • All felt generally well-supported by the medical genetics department and other specialists regarding their expertise with helping LS patients • Half (5) of the providers could easily see and access LS surveillance recommendations from specialists in a preferred area of the electronic medical record, called the ‘problem list’ | “I often refer to the Genetics Department – [it] is a great department…they take care of the counseling and informing on the inheritance pattern of it and who else is at risk”. – IM PCP “I think the GI Department does a really good job of population management.” – FM PCP “So it looks like [patient] recently saw GI, and had some recommendation has been updated, saying they should have a colonoscopy every one to two years so that helps... now it is in the problem list, so if somebody sees that they will know that that needs to be followed up on.” – IM PCP “I get the email reminders about those follow-up screenings needed every year. Usually [patient] gets an ultrasound, lab-work, a gynecological exam once a year, and she also gets cancer screening and upper and lower endoscopy periodically. I usually get reminders about her and do outreach calls”. – IM PCP |
Barriers to surveillance key findings | Exemplar quotes |
Patients • 42% (5) identified challenges in finding providers to work with that know about and understand LS and related screening criteria or being able to access the same provider (e.g. same genetic counselor) • A quarter (3) cited frequent colonoscopy preparation as burdensome • 3 also felt there was a lack of routine communication from the health system on about LS and related care | “Providers go, ‘Well now that you have Lynch you’re probably going to know a lot more about what is out there than us because you’re going to be actively researching it.’ I get that, but you are my healthcare provider, so I’d like a little bit of assistance from you too.” – female “Going through the colonoscopy is not that big of a deal but it also is – the prep for it is a lot of work and not very pleasant either!” – male “I’ve had so many of them [providers] ask me specifics on it – ‘I’ve heard about this but what exactly am I looking at?’ And then they had to go back and look – I try and give them so much information on why I’m doing [frequent colonoscopies], and some doctors question why [we] keep doing colonoscopies. I mean, they haven’t had anything found, so why do they keep requesting them…” - female |
Providers • Most (9) viewed LS as a complex topic and rare topic area • Most (9) described difficulty knowing exactly who on their care panel has LS given no discrete EMR flag exists • Half (5) indicated placement of LS surveillance recommendations by specialists varies in location and is often buried in areas of the EMR that are difficult to efficiently view or search | “The fact I have one patient out of fifteen hundred [makes] it feel to me like it is not a common enough syndrome – and it is complex enough that I don’t think it is realistic to do proper Lynch Syndrome screening and surveillance in primary care.” – IM PCP “I think the communication to let us know if we have a patient with Lynch Syndrome is very important and if they’ve been referred to seeing a geneticists [yet]…what would be helpful is a clear way to know this patient has this…” – IM PCP . “The problem list is the thing that makes all of us [aware]… it is our shared medical record but it is searchable. So, if something is in the progress note, that is great, but when you are looking at a chart that has thousands of things in it, you don’t have time to search through progress notes to find the genetic note to tell you what to do.” – FM PCP |