Table 4 Facilitators and barriers to LS surveillance care coordination (patient [N = 12]; provider [N = 10])
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 |