Table 5 Comparison of qualitative interview data to colonoscopy, endoscopy, and genetics visit adherence
From: Recommended care and care adherence following a diagnosis of Lynch syndrome: a mixed-methods study
| Â | Patient 1 | Patient 2 | Patient 3 | Patient 4 | Patient 5 | Patient 6 | Patient 7 | Patient 8 | Patient 9 | Patient 10 | Patient 11 | Patient 12 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|
Patient Recommendations / Advice for Health System | ||||||||||||
Automated reminders | Yes | Yes | Â | Yes | Yes | Yes | Yes | Yes | Â | Yes | Yes | Â |
Desire regular outreach from genetics dept. | Â | Yes | Â | Yes | Â | Yes | Â | Yes | Â | Â | Yes | Â |
Improve provider (PCP) knowledge of LS | Â | Â | Â | Yes | Â | Yes | Â | Yes | Yes | Yes | Â | Â |
Ensure clarity regarding who is primary care coordinator | Yes | Yes | Â | Â | Â | Â | Â | Â | Â | Â | Â | Â |
Surveillance Tracking / Monitoring | ||||||||||||
Patient takes sole responsibility | Â | Yes | Â | Â | Â | Yes | Â | Â | Â | Yes | Yes | Â |
Patient and providers jointly track/monitor | Yes | Â | Yes | Yes | Yes | Â | Yes | Yes | Yes | Â | Â | Yes |
Patient Identified Barriers | ||||||||||||
Patient as expert for colonoscopy frequency | Â | Â | Â | Â | Yes | Yes | Â | Yes | Â | Â | Â | Â |
Colonoscopy frequency and prep burdensome | Yes | Â | Â | Â | Yes | Â | Â | Â | Yes | Â | Â | Â |
Finding knowledgeable providers (PCP) or seeing same provider | Â | Yes | Â | Yes | Yes | Yes | Â | Yes | Â | Â | Â | Â |
Lack of regular health system communication re LS | Â | Yes | Â | Â | Yes | Yes | Â | Â | Â | Â | Â | Â |
Surveillance Recommendation Adherence | ||||||||||||
Colonoscopy (%; intervals adherent of intervals observed) | 100% (4 of 4) | 100% (1 of 1) | 100% (4 of 4) | 100% (2 of 2) | 100% (1 of 1) | 100% (3 of 3) | 100% (3 of 3) | 0% (0 of 3) | 0% (0 of 2) | 50% (1 of 2) | 100% (6 of 6) | 50% (2 of 4) |
Endoscopy (%; intervals adherent of intervals observed) | 50% (3 of 6) | INC | 100% (1 of 1) | 100% (1 of 1) | INC | 100% (2 of 2) | 100% (3 of 3) | 0% (0 of 3) | INC | 50% (1 of 2) | 100% (2 of 2) | INC |
Genetics Visit (%; intervals adherent of intervals observed) | 100% (4 of 4) | UNS | 100% (3 of 3) | 100% (1 of 1) | 100% (1 of 1) | 80% (4 of 5) | 60% (3 of 5) | 67% (2 of 3) | UNS | 100% (2 of 2) | 33% (1 of 3) | UNS |
Additional details from qualitative interviews | ||||||||||||
Remarks on colonoscopy | Intentionally doing it closer to the 2 year part of their 1–2 year interval | Intentionally doing it closer to the 2 year part of their 1–2 year interval |  |  |  | Intentionally doing it closer to the 2 year part of their 1–2 year interval |  |  | Difficult to manage a colonoscopy with a colostomy bag, so they are planning to do every 2–3 years because of burden |  |  |  |
Remarks on colonoscopy and endoscopy coordination | Â | Â | Â | Â | Â | Â | Â | Confusion about coordination of endoscopy or if it is needed? Less on the radar than colonoscopy. | Â | Confusion about coordination of endoscopy or if it is needed? Less on the radar than colonoscopy. Patient concerned if they should alternate years | Intentionally timing endoscopy and colonoscopy on different years, but knew to do it | Â |
Remarks on issues with provider | Decided not to do endoscopy again with a discussion with the provider | Trust themselves over doctor/system reminder |  |  |  | Trust themselves over doctor or system reminders |  |  |  | Provider pushed back saying you shouldn’t get a colonoscopy because of age (older patient, greater than 70); trust themselves over doctor/system reminder | Took control of their own care; GI wanted endoscopy every year, but patient pushed back asking to do it every other year, so they could manage their care better; trust themselves over doctor/system reminder |  |