Evidence map›Paper›PMID 31887175›Full record

ArticlePloS one2019

Experiences of health services and unmet care needs of people with late-stage Parkinson's in England: A qualitative study.

Joy Read, Sarah Cable, Charlotte Löfqvist, Susanne Iwarsson, Gergely Bartl, Anette Schrag

Registry-linked trialOpen access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in PloS one, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05437458 (Parkinson's Disease), which is not on this map. Cited by 25 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
25citing papers in PubMed, 2 pooled it
2.7field-weighted citation impact, top 10% of its field
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.

NCT05437458 unknown statusnot on this mapstarted 2022, after this paper: background citation

Parkinson's Disease: Risk Assessment of Persistent Delirium and Its Management

TypeobservationalSponsorNewcastle UniversityRan2022 to 2025Enrolled217ConditionsParkinson Disease, Delirium in Old AgeArmsDelirium (exposure)
3 · Its place in the literature

Who cites it

25 citing papers in PubMed, 2 syntheses or guidelines pooled it, 37 citations in OpenAlex.

  1. Pooled it
  2. Person-centred integrated care for people living with Parkinson's, Huntington's and Multiple Sclerosis: A systematic review.Health expectations : an international journal of public participation in health care and health policy · 2024
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  9. Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals.Health expectations : an international journal of public participation in health care and health policy · 2024
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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

6 authors at 2 institutions in 2 countries.

Joy ReadDepartment of Clinical and Movement Neurosciences, UCL Queen Square Institute of Neurology, University College London, United Kingdom.ORCID 0000-0002-3028-3975
Sarah CableDepartment of Clinical and Movement Neurosciences, UCL Queen Square Institute of Neurology, University College London, United Kingdom.
Charlotte LöfqvistDepartment of Health Sciences, Lund University, Lund, Sweden.
Susanne IwarssonDepartment of Health Sciences, Lund University, Lund, Sweden.
Gergely BartlDepartment of Clinical and Movement Neurosciences, UCL Queen Square Institute of Neurology, University College London, United Kingdom.
Anette SchragDepartment of Clinical and Movement Neurosciences, UCL Queen Square Institute of Neurology, University College London, United Kingdom.
National Hospital for Neurology and Neurosurgery · GBLund University · SE

Funding

Department of Health RP-PG-1016-20001
6 · The paper itself

Abstract

aimTo explore experiences of health services and unmet care needs by people with late-stage Parkinson's in England.

methodTen participants, at Hoehn and Yahr stage 4 or 5, were interviewed using semi-structured open-ended questions. Data were analysed using qualitative thematic analysis.

findingsParticipants reported that whilst under the treatment of specialist hospitals, the majority of care provision had shifted into the community, often because hospital-based services were felt to be difficult to access and have limited benefit to them. When using health-care services, participants frequently experienced having to 'fit-in' to service structures that did not always accommodate their complex needs. Despite high levels of disability, participants expressed their desire to maintain their identity, normality of interests and activities in their lives, including remaining in their own homes. This was facilitated by bespoke care and equipment, and positive relationships with care providers. Knowledge on disease management was a key factor in their perceived ability to remain in control. Family caregivers had a central role in facilitating care at home. There was uncertainty about and little planning for the future, and moving to a residential nursing home was perceived an undesirable but potentially necessary option for future care.

conclusionUnmet care needs identified by people with late stage Parkinson's in England include greater flexibility of healthcare structures and bespoke service provision, to accommodate their individual complex needs. Support in their own homes and positive relationships with healthcare providers help People with Parkinson's (PwP) to maintain a degree of normality and identity, and provision of information help them maintain some control. There is a need for more informed discussions on future care planning for this specific population.

Indexed as

AgedAged, 80 and overCaregiversDelivery of Health CareEnglandFemaleHealth PersonnelHealth ServicesHumansMaleParkinson DiseasePatient Reported Outcome MeasuresSurveys and Questionnaires

Identifiers

PMID31887175
PMCPMC6936884
OpenAlexW2998541771

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

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.