Table 3 Monitoring of / support with LS surveillance recommendations (patient [N = 12]; provider [N = 10])
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 |