We found that the CE program was feasible in a high-volume neurology clinic over a 34-month enrollment period., and there was acceptability by caregivers based on survey data. The CTNs, despite carrying a relatively larger number of dyads compared to prior studies, were valued by dyads with 87–92% of participants rating their experiences as being favorable. These numbers are similar to what has been documented in the past for CTNs and suggest that PWDs and care partners appreciate this service regardless of whether the healthcare setting is academic or non-academic [4].
In terms of adoption by our healthcare system, the two HP-CMA CTNs were able to take on a larger caseload compared to the literature, managing 570 referrals to the program. Compared to the original UCSF CE model, our ‘dosage’ of CTNs calls was less than that of the published trial (median number of calls were 6 versus 12, and median duration was 12 minutes versus 40)[4]. However, it should be noted that 65% of patients of PWD at baseline were considered “mild” stage (2% advanced stage) based on the DSRS whereas the UCSF CE as described by Possin and colleagues consisted of 49.8% mild stage patients (21.5% advanced stage), thus suggesting that the HP-CMA cohort was less complicated and therefore, required fewer calls from CTNs.
This investigation was not powered nor was it designed to compare healthcare-related outcomes between those PWDs enrolled and not enrolled in the CE. However, our preliminary analysis did reveal a variety of interesting findings.
The CE resulted in significant benefit in helping care partners cope with the emotional challenges of caregiving, address sleeping problems, and assist with finding caregiving help as shown in Fig. 2. It seemed that care partners with moderate-severe depression experienced a reduction of the PHQ9 over the 1-year period. In addition, CTNs assisted dyads with proactive planning such that there was a significant increase in the numbers of PWDs completing an advance directive or durable power of attorney. Completion of advanced directives is frequently overlooked by PCPs and specialists with only 7.4–42.3% of PWDs completing advanced directives[11].
The HP-CMA CE was based on the program developed by Possin and colleagues that took place at University of California, San Francisco and University of Nebraska Medical Center. However, due to the nature of a non-academic, clinical environment, our CE implementation differed in terms of its fidelity to the previous described program in a variety of ways. Firstly, we had no formal inclusion criteria beyond the fact that patients had to be aged > 45 and have a history of MCI or dementia. We did not require PWDs to be enrolled in Medicare or Medicaid, and dyads did not need to complete formal consent to receive the care. The HP-CMA “dose” of phone contacts with the CTN was less than that of the original CE model, which was primarily due to the higher caseloads at our site and relatively milder stage of dementia. Furthermore, whereas prior versions of the CE included an embedded pharmacist, the HP-CMA did not have the ability to provide the CE’s formal medication review service on every patient [[12] and instead deferred medication management questions to either the nurse or participating neurologist. In addition, data relating to outcomes and survey data were obtained by mailing information either traditionally or via email to participating dyads whereas UCSF research coordinators conducted formalized telephone surveys with participants. We suspect this factor impacted response rate to follow-up assessments and potentially data accuracy. Finally, we did not include the QoL-AD outcome that assessed PWD quality of life as rated by the care partner. In the published CE randomized clinical trial, caregiver QoL-AD of the PWD declined in both treatment and usual care groups but the decline was more pronounced in usual care arm. Since caregiver rated QoL declines with progressive dementia, we did not feel that assessment of this variable would provide meaningful information in the absence of a control population of dyads.
Strengths of this investigation include the largest cohort outside of an academic institution to be enrolled into the CE. Furthermore, this program was able to target 19% of dyads living within rural Minnesota and Wisconsin-based communities with limited access to care. Limitations beyond what was described above include the lack of comparison to a control group. The extensive staff turnover may have further impacted continuity of care. It should also be noted that longitudinal data from follow-up surveys was available for only 30% of participants, and the CE initiative was performed in a specialized dementia clinic, both factors that may impact the generalizability of this study’s results. Data relating to hospitalization and ED visitation was extracted from the Epic EMR, which only captured clinical information from within the HealthPartners system as well as from outside major hospital systems through “care everywhere.”
Our experience applying the CE within the HealthPartners integrated medical system indicates that this program can be successfully integrated into purely clinical settings. Next steps are to participate in a clinical investigation to evaluate healthcare utilization outcomes across multiple healthcare organizations by comparing EHR data between CE and non-CE enrolled dyads.