Zachary A Macchi1,2, Roman Ayele3, Megan Dini1, Jensine Lamira4, Maya Katz5, Steven Z Pantilat6, Jacqueline Jones3, Benzi M Kluger7. 1. Department of Neurology, University of Colorado Anschutz, Aurora, CO, USA. 2. Department of Internal Medicine, University of Colorado Anschutz, Aurora, CO, USA. 3. College of Nursing, University of Colorado Anschutz, Aurora, CO, USA. 4. Department of Cell & Developmental Biology, University of Colorado Anschutz Medical Campus, Aurora, CO, USA. 5. Department of Neurology, University of California San Francisco, San Francisco, CA, USA. 6. Department of Medicine, University of California San Francisco, San Francisco, CA, USA. 7. Departments of Neurology and Medicine, University of Rochester Medical Center, Rochester, NY, USA.
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.
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.
Entities:
Keywords:
Alzheimer’s disease; COVID-19; Parkinson’s disease/Parkinsonism; neuropalliative care; quality of life
Authors: Denis Shub; David M Bass; Robert O Morgan; Katherine S Judge; A Lynn Snow; Nancy L Wilson; Annette Walder; Brian Murry; Mark E Kunik Journal: J Geriatr Psychiatry Neurol Date: 2011-12 Impact factor: 2.680
Authors: Kate Perepezko; Jared T Hinkle; Melissa D Shepard; Nicole Fischer; Martinus P G Broen; Albert F G Leentjens; Joseph J Gallo; Gregory M Pontone Journal: Int J Geriatr Psychiatry Date: 2019-05-20 Impact factor: 3.485
Authors: Sascha R Bolt; Jenny T van der Steen; Irma Mujezinović; Daisy J A Janssen; Jos M G A Schols; Sandra M G Zwakhalen; Chandni Khemai; Els P A G M Knapen; Lara Dijkstra; Judith M M Meijers Journal: Int J Nurs Stud Date: 2020-09-30 Impact factor: 5.837
Authors: Elvira Anna Carbone; Renato de Filippis; Roberta Roberti; Marianna Rania; Laura Destefano; Emilio Russo; Giovambattista De Sarro; Cristina Segura-Garcia; Pasquale De Fazio Journal: Front Psychol Date: 2021-12-24