TABLE 3.
Reasons lost to follow-up
| Reasonsa | Definitions & examples | Quotes |
|---|---|---|
| Transferred care to another provider/facility | Note indicates the patient plans to continue follow-ups with outside care team after final MAC visit This can include other neurologist, PCP, or care at a facility if indicated as replacement for care provided by MAC. | “Patient’s wife called to cancel his appt for [date]. Per [wife] he will be moving and continuing his care at [long-term care facility].” -Provider note |
| Patient on hospice | Patient/caregiver canceled follow-up MAC appointment and cited being on or transitioning to hospice in the context of discontinuing MAC care. | “Received a follow-up call from [Caregiver, wife] regarding annual follow with [MAC Provider]. Wife states that patient has been immobile and in hospice for the last 6 months, and will not be returning for further work up.” -Provider note |
| Logistical challenges (distance to clinic, difficult transfer from facility) | Patient is not continuing care with MAC because it is difficult or inconvenient for some reason that is not related to the patient’s function/condition, for example, distance to clinic, location, or having moved away. | “Patient’s husband called to cancel appt for tomorrow. He said it’s very hard to get to [clinic] from where they live and will not reschedule at [this] time.” -Provider note |
| Financial or insurance difficulties | Patient/caregiver not following up with MAC due to factors related to finances or insurance matters. For example, insurance change, cost of visit, financial hardship. | “Spoke to [Caregiver] this morning regarding scheduling a follow-up for [Patient]. Unfortunately the patient has switched over to [insurance provider] for health coverage and will not be able to return to [clinic], since [their insurance] only covers in network providers.” -Provider note |
| Functional challenges (mobility, behavior) | Patient/caregiver not following up with MAC due to difficulty having to do with the patient’s behavior, mobility, or function(s). | “[Wife] would like to cancel the follow-up appointment scheduled for [date]… [She] will not be able to bring him to clinic because she is no longer able to transfer him from a wheelchair.” -Provider note |
| Patient/family decision-assessed follow-up to be not necessary, desirable or worth it | Patient/caregiver indicates a judgment or preference that informs their decision to not continue at the MAC. | “I feel like we have learned all we are going to learn from someone of your expertise, [MAC Provider]. Basically, with each visit, I learn that the disease is running its normal course of events. No news.” -Caregiver email |
a
Multivariate model included age, sex, education, and primary dementia diagnosis.