Evidence map›Paper›PMID 37854173›Full record

ArticleNeurology. Clinical practice2023

Reach of Palliative Care for Parkinson Disease: Results From a Large National Survey of Patients and Care Partners.

Sandhya Seshadri, Megan Dini, Zachary Macchi, Peggy Auinger, Sally A Norton, Jodi S Holtrop, Benzi M Kluger

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Neurology. Clinical practice, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 2 pooled it
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Article
  4. Article
  5. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Sandhya SeshadriDepartment of Neurology (SS, PA, BMK), University of Rochester; Parkinson's Foundation (MD), New York; Department of Neurology (ZM), University of Colorado Anschutz Medical Campus; Center for Health & Technology (PA), University of Rochester; University of Rochester School of Nursing (SAN), NY; and Department of Family Medicine at the University of Colorado School of Medicine (JSH), Anschutz Medical Campus.ORCID https://orcid.org/0000-0002-0809-6903
Megan DiniDepartment of Neurology (SS, PA, BMK), University of Rochester; Parkinson's Foundation (MD), New York; Department of Neurology (ZM), University of Colorado Anschutz Medical Campus; Center for Health & Technology (PA), University of Rochester; University of Rochester School of Nursing (SAN), NY; and Department of Family Medicine at the University of Colorado School of Medicine (JSH), Anschutz Medical Campus.ORCID https://orcid.org/0000-0002-7366-1112
Zachary MacchiDepartment of Neurology (SS, PA, BMK), University of Rochester; Parkinson's Foundation (MD), New York; Department of Neurology (ZM), University of Colorado Anschutz Medical Campus; Center for Health & Technology (PA), University of Rochester; University of Rochester School of Nursing (SAN), NY; and Department of Family Medicine at the University of Colorado School of Medicine (JSH), Anschutz Medical Campus.ORCID https://orcid.org/0000-0001-8900-9500
Peggy AuingerDepartment of Neurology (SS, PA, BMK), University of Rochester; Parkinson's Foundation (MD), New York; Department of Neurology (ZM), University of Colorado Anschutz Medical Campus; Center for Health & Technology (PA), University of Rochester; University of Rochester School of Nursing (SAN), NY; and Department of Family Medicine at the University of Colorado School of Medicine (JSH), Anschutz Medical Campus.ORCID https://orcid.org/0000-0002-5262-8946
Sally A NortonDepartment of Neurology (SS, PA, BMK), University of Rochester; Parkinson's Foundation (MD), New York; Department of Neurology (ZM), University of Colorado Anschutz Medical Campus; Center for Health & Technology (PA), University of Rochester; University of Rochester School of Nursing (SAN), NY; and Department of Family Medicine at the University of Colorado School of Medicine (JSH), Anschutz Medical Campus.ORCID https://orcid.org/0000-0001-7686-6327
Jodi S HoltropDepartment of Neurology (SS, PA, BMK), University of Rochester; Parkinson's Foundation (MD), New York; Department of Neurology (ZM), University of Colorado Anschutz Medical Campus; Center for Health & Technology (PA), University of Rochester; University of Rochester School of Nursing (SAN), NY; and Department of Family Medicine at the University of Colorado School of Medicine (JSH), Anschutz Medical Campus.ORCID https://orcid.org/0000-0002-5301-4014
Benzi M KlugerDepartment of Neurology (SS, PA, BMK), University of Rochester; Parkinson's Foundation (MD), New York; Department of Neurology (ZM), University of Colorado Anschutz Medical Campus; Center for Health & Technology (PA), University of Rochester; University of Rochester School of Nursing (SAN), NY; and Department of Family Medicine at the University of Colorado School of Medicine (JSH), Anschutz Medical Campus.ORCID https://orcid.org/0000-0002-6259-329X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background and Objectives: People with Parkinson disease (PWP) and their care partners have high palliative care needs resulting from disabling motor and nonmotor symptoms. There is growing support for palliative care (PC) approaches to Parkinson disease. However, little is known regarding the extent to which the palliative needs of PWP and care partners are currently being met. This study's primary objective is to describe PWP's and care partners' perceptions of the extent to which their PC needs are being met. Secondary objectives are to describe their perceptions of the quality of clinical communication and their knowledge of PC. Methods: PWPs and care partners (n = 12,995) who had consented to receiving surveys from the Parkinson's Foundation were emailed an electronic survey. PC was operationalized as comprising 5 key components: systematic assessment and management of (1) nonmotor symptoms, (2) PWPs' emotional and spiritual needs, (3) care partners' needs, (4) the completion of annual advance care planning, and (5) timely referrals to specialist palliative care and hospice when appropriate. Results: A total 1,882 individuals (1,266 PWP and 616 care partners) responded to the survey (response rate 14.5%). Few PWP (22%) reported that their neurologists never asked regarding bothersome nonmotor symptoms or did so or only if they brought it up. Fifty percent of PWP reported that pain as a specific nonmotor symptom was never managed or managed only if they brought it up. Similarly, PWPs' emotional and spiritual needs (55%), care partners' well-being (57%), and completion of advance care planning documentation (79%) were never addressed or only addressed if PWP brought it up. The quality of clinical communication was generally rated as open and honest (64% PWP). Fewer PWP (30%) reported that doctors helped them deal with the uncertainties of Parkinson disease. Most PWP (85%) reported being knowledgeable regarding PC, and 68% reported that the goal of PC was to help friends and family cope with the illness. Discussion: Although some elements of PC are currently being addressed in routine care for PWP, there are many gaps and opportunities for improvement. These data may facilitate focused attention and development of resources to improve the quality and availability of PC for Parkinson disease.

Identifiers

PMID37854173
PMCPMC10581080

What OpenQuestion holds

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Registered trials

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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.