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Table 4 Provider and patient recommendations derived from qualitative interviews (N = 22; 10 Providers, 12 Patients)

From: Recommended care and care adherence following a diagnosis of Lynch syndrome: a mixed-methods study

Provider Recommendation

N = 10 (%)

Illustrative Quotes

Automated prompting of patient and PCP regarding recommended LS surveillance, including return to medical genetics

10 (100)

“Make it similar to BRCA1… a patient of mine was recommended to get an MRI, alternating by six months. There was a helpful message that said, ‘hey it is time to order this patient’s MRI’. So that is great, thank you for providing me that support. So, it feels to me for Lynch Syndrome, there has to be that sort of mechanism.”

“It would be great if patients would get a postcard every couple of years saying, ‘hey, you have Lynch Syndrome and you haven’t checked in with the genetics department for a couple of years - maybe you should come by.”

Clear, consistent documentation of LS diagnosis available in EMR

10 (100)

“So, something like that if it’s in the problem list, it says, ‘she has Lynch Syndrome, and she has had a history of this, and this is the recommendation for follow-up screening’. And that would really help, so every time I pull up the patient - anybody who pulls up the patient - it will be on their problem list and it will be clear.”

Development of LS registry or improved coordination with other cancer/genetic registries

6 (60)

“I think there needs to be some registry for who has these patients so that they can be followed regularly and it’s not falling on the PCP to do a panel search to try and figure out which one of their patients have Lynch Syndrome and did they have their colonoscopy recently.”

Development of clinical resource practice guidelines for LS embedded within the EMR that highlight current surveillance recommendations and provide “steps” for providers making LS-related referrals

5 (50)

“I think for the newer clinicians, and for those of us that have been here longer, there should be a practice guideline, clinical resource practice guideline for Lynch Syndrome that could have brief [information] on what we do and what the current recommendations are - a place that you could essentially update when there are new recommendations on how these patients are managed…I’d want it to be on my referral to genetics.”

Offering refresher education course on LS and surveillance needs to all pertinent providers

5 (50)

“I would love that [refresher class]. I mean, Lynch Syndrome is such a rare thing, you don’t come across it that often…I think it’s a field that can change a lot. I think it totally makes sense because even if you have only one patient, it’s good to know more about it.”

Patient Recommendation

N = 12 (%)

Illustrative Quotes

Consistent, automated reminder prompts

9 (75)

“I think it might be worthwhile for patients to be prompted on an annual basis for the appointment with either their primary care provider or their genetic counselor to go over all the screenings that they’re due for and to help them get those scheduled. I just think if you really want people to do it, it might be worth an extra follow-up to make sure people do it.”

Regular outreach from genetics

5 (42)

“I go on the Lynch Syndrome International [website] every once in a while, but you really have to search around these sites to find latest articles and stuff. So if genetics really wanted to be proactive, they could have somebody who is kind of finding that information and sending it out to us, rather than kind of having us research it… I’d just like a little bit of assistance.”

Improve provider knowledge about LS and reasons for different surveillance recommendations

5 (42)

“I think it would be good to make sure that providers, because they have varying degrees of knowledge, establish a base level of knowledge about Lynch that everybody has or figuring out what primary care doctors are treating patients who have Lynch and give them more information.”

Proactively offering genetic screening for all cancers

4 (33)

“The only thing I can say is it would have been nice, when you go over a patient’s family history and there is some history of colon cancer like in my case, it would be nice to find out earlier whether one has a gene mutation rather than waiting until a cancer developed.”

Ensuring clarity regarding who is the primary care coordinator for LS-related care

2 (17)

“Sometimes it’s a question about who’s in charge… it be helpful to have a better understanding of when the transition is being made, let’s say back from a specialist to your primary care person, who is the main person to be working with? Because sometimes, I wasn’t sure who was in charge.”