Reasons for All Calls and Overall ED Utilization Rate

Similar to the other two studies, the majority of our calls were related to worsening of symptoms and issues related to medications. ^{Reference Roberts-South, Hall and Jog3,Reference Adam, Ferrara, Aguilar Tabora, Nashatizadeh, Negoita and Jankovic43} Top reasons for all 337 calls in our study were NMS (28%), followed by medication issues (24%) which included ADE (21%) and drug interactions (3%), and lastly MS (18%). Our findings contrast with the TI study in a younger group of PWP (age 67.9), where MS was the most common reason (27%), followed by medication issues (22.4%), and NMS (10.4%) despite a similar duration of disease (9.8 years in their study vs. 9.5 years in ours). ^{Reference Roberts-South, Hall and Jog3} This highlights the much more dominant role of NMS in older PWP compared to younger PWP in terms of seeking clinical support. This is consistent with literature which has noted that older age of onset of PD may be associated with relatively more NMS compared to younger age of onset. ^{Reference Mendonça, Lampreia, Miguel, Caetano, Barbosa and Bugalho44,Reference Zhang, Yu and Guo45}

Our study found that most (70%) of the calls required medication management/adjustment, in contrast to lower proportions of 42.5% in Adam et al.’s study and 35% in Roberts-South et al.’s study. ^{Reference Roberts-South, Hall and Jog3,Reference Adam, Ferrara, Aguilar Tabora, Nashatizadeh, Negoita and Jankovic43} This is expected when caring for an older population, given the volumes of literature documenting the high risk of ADE, polypharmacy and the value of medication management in older individuals. ^{Reference Onder, Lattanzio and Battaglia46–Reference McLean, Hindle, Guthrie and Mercer51} This further suggests that medication management is an essential component in the care of older PWP and should be included in care planning for this population. In our study, earlier clinic appointment was necessary for issues that could not be resolved over the phone for 2% of patients, compared to 5.8% in Roberts-South et al.’s study and 2.5% in Adam et al.’s study. ^{Reference Roberts-South, Hall and Jog3,Reference Adam, Ferrara, Aguilar Tabora, Nashatizadeh, Negoita and Jankovic43} Thus, even for an older population of PWP, with the higher inherent risks of poor health outcomes, TI was able to resolve issues and divert the need for earlier clinic appointments, which is an important consideration given limited resources.

Despite having an older patient population, we had a similarly low overall ED utilization rate of 2% amongst all calls vs. 2.56% in the nurse-led study and 1.26% in physician-led study, although the other studies did not specifically study ED visit intent or aversion. ^{Reference Roberts-South, Hall and Jog3,Reference Adam, Ferrara, Aguilar Tabora, Nashatizadeh, Negoita and Jankovic43}

Crisis Calls and ED Visit Aversion

In order to determine if our TI averted ED visits, we prospectively asked the callers regarding whether they intended to visit ED, and classified those as “crisis calls”. The prospective question at the time of initial phone call prevented recall bias, reflected the caller’s perspective of what constituted a “crisis”, and documented their original plan of action, rather than our clinical opinion. We feel this was crucial in the methodology and would reflect the burden experienced by the patients/caregivers more accurately.

About one out of every four calls was specified by callers as “crisis calls”. Reasons for these 82 crisis calls were NMS (39%), medication issues 32.7% (including ADE (29%) and drug interactions (3.7%)), and MS (18%). The proportion of NMS and medication issues was even higher among crisis calls compared to all calls, accounting for almost three quarters of crisis calls. In total, 92.7% of these callers who indicated intention to visit ED did not end up going to ED after TI. Although there was no control group, our data suggests that our TI was successful in aversion of potential ED visits. We suspect that spontaneous resolution of the issues leading to “crisis calls” (see Table 3) would be very unlikely without appropriate clinical intervention in this older population of PWP.

According to the Canadian Institute for Health Information, one in five ED visits in Canada could have been prevented with better care and support from medical clinics. ⁵² Ontario’s Telehealth service advised 25% of all callers in 2018/19 to go to ED. ^{Reference Basky53} The Director of one Telehealth Service acknowledged that the protocols used by telehealth nurses to assess callers err on the side of caution because assessment over the phone is limited. ^{Reference Basky53} In contrast, TI run by our clinical pharmacist, who was familiar with the patients’ medical conditions and medications, only advised 7.3% of callers with “crisis” issues to go to ED. This highlights the significant potential cost savings for the public or single payer health care system if a similar clinician-run TI service was broadly integrated into longitudinal care for the older PWP population.

Implications for Care Planning for Older PWP

Given the high risk of hospitalization and associated poor outcomes for older PWP, prevention of ED visit and hospitalization is essential and must be part of care planning. Multiple studies have described strategies such as frequent neurologist visits, medication management, interdisciplinary approach, and addressing caregiver burden to prevent hospitalization. ^{Reference Hassan, Wu and Schmidt7,Reference Shahgholi, De Jesus and Wu9,Reference Muzerengi, Herd, Rick and Clarke14} The most effective strategy to date cited 50% reduction of admission using an “open door policy” in a younger population. ^{Reference Klein, Prokhorov, Miniovitz, Dobronevsky and Rabey12}

Our study data suggests that 92.7% of potential ED visits were averted by TI in our older population with high hospitalization risk due to comorbidity and polypharmacy. ^{Reference Roberts-South, Hall and Jog3,Reference Ng, Maxwell and Yates5,Reference Shahgholi, De Jesus and Wu9}

Telephone-based interventions may form one part of a larger interdisciplinary approach in caring for older PWP, which also includes CGA, medication management, and enhanced caregiver support. These may help address the unique needs and characteristics of this population including:

1. 1. higher NMS and medication issues

2. 2. heightened importance of the caregiver, who initiated 81% of the calls in our study.

Comprehensive Geriatrics Assessment for Older PWP

Our study highlighted the predominance of NMS in “crisis calls” and all calls in our older PWP population. This is consistent with literature. ^{Reference Zhang, Yu and Guo45,Reference Hu, Ou and Liu54} In particular, the impact of neuropsychiatric disturbances, cognitive impairment on quality of life, and caregiver burden may exceed that of MS. ^{Reference Barone, Antonini and Colosimo55–Reference Grün, Pieri, Vaillant and Diederich58} Neuropsychiatric and cognitive issues were reported in over half of our patient population. Although we did not specifically measure frailty, the high proportion of NMS and advanced age of our patients would suggest a high co-occurrence of frailty based on existing associations from the literature. ^{Reference Peball, Mahlknecht and Werkmann22,Reference Smith, Brennan, Gaunt, Ben-Shlomo and Henderson23,Reference Tan, Hew and Lim59} Since CGA is the recognized standard in caring for older individuals with frailty in multiple medical conditions, ^{Reference Ellis, Gardner and Tsiachristas25–Reference Welsh, Gordon and Gladman29} it may also be an appropriate and effective approach in caring for older PWP.

An interdisciplinary, comprehensive treatment plan with goals of care is formulated through CGA, and serves as guidance for the clinic pharmacist in provision of TI advice. The CGA approach may be one way to operationalize the recommendations from the literature and PD guidelines: PWPD should have a comprehensive, personalized care plan agreed between the patient, their family/caregivers, and the interdisciplinary team of care providers. ^{Reference Grimes, Fitzpatrick and Gordon4,Reference Okun60–Reference Rogers, Davies, Pink and Cooper62}

More widespread adoption of a CGA approach for older PWP, in a collaborative model with movement disorders specialists, is an area of opportunity for the medical community to potentially improve our care for this population, and further research on this topic would be important.

Since the completion of this study, our clinic has expanded to include a nurse and a neurologist to broaden the scope of interprofessional care provided for older PWP.

Expert-Led Medication Management

This is the first pharmacist-led TI study in a Parkinson’s Clinic. One of the main reasons for crisis calls was medication issues (drug interaction and ADEs – Table 3), such as psychosis from antiparkinsonian medications, falls from cumulative hypotensive effects of drugs like beta blockers, alpha blockers (often prescribed for urinary issues in men), dopaminergic medications, and antidepressants.

The relation of increased ADE risk to age is well described and is one of the top reasons for hospitalization of older adults. ^{Reference Onder, Lattanzio and Battaglia46,Reference Lavan and Gallagher49,Reference Routledge, O’Mahony and Woodhouse63,Reference Beijer and De Blaey64} The World Health Organization highlights polypharmacy as one of the key focus areas of its Global Patient Safety Challenge ^{Reference Klein, Prokhorov, Miniovitz, Dobronevsky and Rabey12,Reference Schrag, Jahanshahi and Quinn21} and a leading problem in elderly patients in general and those with PD. ^{Reference McLean, Hindle, Guthrie and Mercer51,Reference Müller-Rebstein, Trenkwalder, Ebentheuer, Oertel, Culmsee and Höglinger65} Simplifying the drug regimen has been recommended in a large NPF hospitalization study of PWP. ^{Reference Shahgholi, De Jesus and Wu9} The CGA approach has proven to be beneficial in improving not just polypharmacy, but the appropriateness of medications being taken by older adults. ^{Reference Unutmaz, Soysal, Tuven and Isik50}

Given the high frequency of call issues that required medication management (69.7%), the optimal individual to fill the TI role is a professional with extensive medication experience in parkinsonism and other chronic medical conditions. Use of a geriatrics pharmacist, as was done in our study, is one avenue to address this clear need. Healthcare professionals with similar experience (e.g. geriatricians, movement disorders specialists, geriatric nurses with training in Parkinsonism) could also potentially fill this role.

The required personnel time of the pharmacist to run TI in our case, to serve all of our enrolled clinic patients (170 in December 2016), with 114 patients/caregivers using the service, 19 min of on the phone time per call, and about 20 min for clinical activities off the phone per call, would be around 220 h per year, which is about 1 h per business day (without considering time spent on follow up). The time requirement has proportionally increased over time with our clinic enrollment. Given the time commitment of 1 h/day for the TI role, an allied health professional such as a geriatrics pharmacist or nurse would be a more practical choice than a physician from a resource perspective.

Enhanced Caregiver Support Through Telephone Intervention

The majority (114 or 67%) of our 170 enrolled clinic patients (or their caregivers) (as of December 2016) utilized the TI service compared to 43% in a previous study of younger patients. ^{Reference Roberts-South, Hall and Jog3} The majority of the calls were initiated by caregivers (81%) rather than patients, in contrast to only 33% in the younger population. ^{Reference Roberts-South, Hall and Jog3} This suggests that when caring for an older population of PWP, the role of caregivers, caregiver stress and support are much more important compared to that in a younger population. This factor must be recognized and reflected in service design.

Neuropsychiatric complications, including psychosis, depression and dementia, which are more common in older PWP, are known in the literature to be correlated with increased caregiver stress ^{Reference Martinez-Martin, Rodriguez-Blazquez and Forjaz57,Reference Schrag, Hovris, Morley, Quinn and Jahanshahi66} and hospitalization. ^{Reference Shahgholi, De Jesus and Wu9} Our study found a total of 32 cases of psychosis (almost 10% of 337 calls), of which 25 led to crisis calls (accounting for 30% of crisis calls). One study which explored caregiver burden in Lewy body dementia (LBD) (including Parkinson disease dementia (PDD) and Dementia with Lewy Bodies (DLB)) found that almost 2/3 (64%) of the caregivers experienced a crisis situation in the past year and 73% of those ended up seeking help in ED. ^{Reference Galvin, Duda, Kaufer, Lippa, Taylor and Zarit67} Our population had a high prevalence of psychiatric morbidity, dementia (majority being PDD), and psychosis, which would suggest that our caregivers likely experienced high caregiver stress based on known associations. Indeed, almost half of our 114 users made a crisis call in 2016. Provision of accessible and practical support through TI to such stressed caregivers may help prevent escalation of crises and ED visits.

Literature and Guidelines have emphasized the importance of addressing caregiver burden in PD and LBD. ^{Reference Grimes, Fitzpatrick and Gordon4,Reference Shahgholi, De Jesus and Wu8,Reference Rogers, Davies, Pink and Cooper62,Reference Galvin, Duda, Kaufer, Lippa, Taylor and Zarit67} In addition to clinical characteristics discussed above, literature has noted that fragmentation of care, multiple visits to different specialists, inadequate communication, poor transitions of care, and lack of a single trusted point of contact are frequent complaints of older patients and are a significant source of caregiver stress. ^{Reference Taylor and Quesnel-Vallée68}

TI by the clinic pharmacist with whom the patients and caregivers have a therapeutic relationship may have served as a form of enhanced caregiver support and a trusted point of contact. The prompt response (within one business day) and individualized attention for an average of 19 min per call may have contributed to building confidence and trust. It should be noted that the average call duration in our study was much longer than that reported previously (6.6 min) in a fellow-run TI service. ^{Reference Adam, Ferrara, Aguilar Tabora, Nashatizadeh, Negoita and Jankovic43} Multiple factors may account for the difference in duration of calls between the two studies. A post-TI anonymous survey by our research assistant (who was not part of the clinical staff, to reduce bias) found that 97.4% of our callers agreed or strongly agreed that they were satisfied with the TI, while 92.1% agreed or strongly agreed that they were sufficiently confident in the service, to always contact the clinic before going to ED. The trust and confidence in a familiar expert clinician, in contrast to a hotline like Provincial Telehealth service, ^{Reference Basky53} may be an important factor in providing effective TI to prevent ED visits.

Limitations

The main limitation of our study was the lack of a control group. We did not include a control for two reasons: it was an exploratory study; and it would have been unfeasible to exclude a portion of patients in our clinic from the TI service when we have run the clinic since 2007 with TI in place. We were not able to determine exactly which aspects of our approach resulted in the success in aversion of ED visits, whether it was the CGA approach, the use of a pharmacist, the 24 h turnaround, or an established therapeutic relationship. While the approach could potentially be generalizable to similar settings in Canada, it is unclear whether it would be generalizable to other countries and other payer systems. The total number of calls, and specifically, numbers of crisis callers and frequent callers, may have been too small to detect significant associations with patients’ characteristics. Due to privacy regulations, we were unable to access the Provincial EMR database to verify if patients visited other ED’s than the one at our hospital. The 1 week follow up calls were hopefully sufficient to reduce recall bias.