Trial reportPalliative medicine2021
Lessons from the COVID-19 pandemic for improving outpatient neuropalliative care: A qualitative study of patient and caregiver perspectives.
Trial report in Palliative medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03076671 (More Than a Movement Disorder), which is not on this map. Cited by 27 papers, 4 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
More Than a Movement Disorder: Applying Palliative Care to Parkinson's Disease
Who cites it
27 citing papers in PubMed, 4 syntheses or guidelines pooled it, 49 citations in OpenAlex.
- Patient and families' perspectives on telepalliative care: A systematic integrative review.Palliative medicine · 2024Pooled it
- The impact of social isolation from COVID-19-related public health measures on cognitive function and mental health among older adults: A systematic review and meta-analysis.Ageing research reviews · 2023Pooled it
- The Experiences of Informal Carers during the COVID-19 Pandemic: A Qualitative Systematic Review.International journal of environmental research and public health · 2022Pooled it
- The Mental Health of Caregivers and Their Patients With Dementia During the COVID-19 Pandemic: A Systematic Review.Frontiers in psychology · 2021Pooled it
- Video and In-Person Palliative Care Delivery Challenges before and during the COVID-19 Pandemic.Journal of pain and symptom management · 2022Trial
- Hospice and Palliative Care During COVID-19 in New York City: Clinician-Reported Patient and Family Experiences and Lessons for Future Crises.The American journal of hospice & palliative care · 2026Article
- Implementation of Telemedicine for Patients With Dementia and Their Caregivers: Scoping Review.Journal of medical Internet research · 2025Article
- Understanding the benefits and limitations of mixing virtual and face-to-face consultations to outpatient palliative care services; a mixed-methods study.BMC palliative care · 2024Article
- 2024 Alzheimer's disease facts and figures.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Caregiver Burden in Parkinson Disease: A Scoping Review of the Literature from 2017-2022.Journal of geriatric psychiatry and neurology · 2024Article
- "Are you listening?": Experiences shared online by family caregivers of patients in the palliative phase during the Covid-19-pandemic.PloS one · 2024Article
- Challenges for palliative care in times of COVID-19: a scoping review.Frontiers in public health · 2024Article
- Improving Documentation of Impulse Control Disorders at a Movement Disorder Program During the COVID-19 Pandemic.Neurology. Clinical practice · 2023Article
- Prediction of outpatient waiting time: using machine learning in a tertiary children's hospital.Translational pediatrics · 2023Article
- Hospice and Palliative Care during Disasters: A Systematic Review.Healthcare (Basel, Switzerland) · 2023Review
- Between a Rock and a Hard Place: The Challenges of Caregiving During a Pandemic for Parkinson's Family Care Partners.The American journal of hospice & palliative care · 2023Article
- The Use of Telehealth Among People Living With Dementia-Caregiver Dyads During the COVID-19 Pandemic: Scoping Review.Journal of medical Internet research · 2023Article
- The Impact of the COVID-19 Pandemic on Care Partners of People with Parkinson's Disease.Movement disorders clinical practice · 2023Article
- Ethical, Legal, Organisational and Social Issues of Teleneurology: A Scoping Review.International journal of environmental research and public health · 2023Article
- Global trends in COVID-19 Alzheimer's related research: a bibliometric analysis.Frontiers in neurology · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundCOVID-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.
aimTo 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.
designThis 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/
participantsData 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).
resultsFour 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.
conclusionsPatients 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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.