Lessons from the COVID-19 pandemic for improving outpatient neuropalliative care: A qualitative study of patient and caregiver perspectives

Abstract

Background: COVID-19 has impacted persons with serious illness, including those with chronic, neurodegenerative conditions. While there are several reports on COVID-19’s impact on inpatient palliative care, literature is limited about the impact on outpatient care which may be more relevant for these patients. Aim: To generate a person-centered description of the impact of COVID-19 from the perspectives of patients living with neurodegenerative disease and caregivers to improve outpatient palliative care delivery. Design: This qualitative study used rapid analysis via matrix design to identify emergent themes related to participant perspectives on the challenges of COVID-19. Data sources included semi-structured interviews, open-ended survey responses, medical record documentation and participant-researcher communications. Setting/Participants: Data was collected from 108 patients with Parkinson’s disease, Alzheimer’s disease or related disorders and 90 caregivers enrolled in a multicenter, clinical trial of community-based, outpatient palliative care between March 20, 2020 and August 8, 2020 (NCT03076671). Results: Four main themes emerged: (1) disruptions to delivery of healthcare and other supportive services; (2) increased symptomatic and psychosocial needs; (3) increased caregiver burden; (4) limitations of telecommunications when compared to in-person contact. We observed that these themes interacted and intersected. Conclusions: Patients and caregivers have unmet care needs because of the pandemic, exacerbated by social isolation. While telemedicine has helped improve access to healthcare, patients and caregivers perceive clear limitations compared to in-person services. Changes in society and healthcare delivery in response to COVID-19 highlight ongoing and novel gaps that must be addressed to optimize future outpatient palliative care for neurologic illness.

The Mental Health of Caregivers and Their Patients With Dementia During the COVID-19 Pandemic: A Systematic Review

“…According to the GRADE approach, only one study presented high quality (Rainero et al, 2021) and three a moderate quality (Lai et al, 2020;Giebel et al, 2020b;Macchi et al, 2021), whereas most of the included research showed very low-to-low quality. Cross-sectional study design, not validated scales, selfreport measures, and video or telephone interviews were the encountered limitations.…”

“…One of the few moderate quality studies according to the GRADE approach provided a person-centered description of the impact of the COVID-19 pandemic, whose results can be considered an exhaustive overview of the main themes that also emerged from other semi-structured interviews and open-ended surveys (Macchi et al, 2021). Besides the increased caregiver strain, disruption to the delivery of healthcare and supportive services was deeply perceived.…”

“…This latter included cancellations of routine appointments and elective procedures, loss of ambulatory services and home health aides, and avoidance of assisted living facilities to avoid contagion. Moreover, increased symptomatic and psychosocial needs, as well as the indispensable role of in-person contact and support emerged (Macchi et al, 2021). Routinely used social support services and facilities are known to improve wellbeing and quality of life of dementia patients (Greenberg et al, 2020).…”

“…The only prospective study included showed the positive impact of supplementary telehealth delivered via video-conferencing apps compared with phone calls alone (Lai et al, 2020). Remote support to examine patients has been validated in several studies (Roy et al, 2021) although a general reluctance among practitioners to implement alternatives to face-to-face consultations was reported (Brant et al, 2016), and patients and caregivers did not perceive it as a substitute for in-person services (Macchi et al, 2021;Tam et al, 2021). Video conferences may overcome these limitations capturing some typical aspects of the face-to-face interaction, suggesting that improving remote support and using communication technologies could represent a new way through which health and social support services can aid.…”

Communication in palliative care during the COVID-19 pandemic: Lessons from rapidly changing, uncertain, complex, and high-stake interventions

“…Maintaining connections and providing psychological and social support to family members were challenging on virtual platforms. In another study, Macchi et al 14 describe the impact of COVID-19 from the perspective of caregivers and patients living with chronic neurodegenerative conditions who were enrolled in a US randomized trial of integrated, outpatient palliative care. 13 Disruption of ambulatory health care services, increasing social isolation and caregiver strain were not fully addressed by telecommunication.…”