Evidence map›Paper›PMID 41518613›Full record

ArticleMovement disorders clinical practice2026

Defining Quality of Life: The Perspective of People Living with Parkinson's Disease.

Samantha Dorrance, Richa Patel, Glenn T Stebbins, Jamie L Adams, Allison M Allen, Tara Hastings, Soania Mathur, Onanong Phokaewvarangkul, Gary Rafaloff, Rajasumi Rajalingam and 4 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Movement disorders clinical practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–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

1 citing paper in PubMed.

  1. What's in a name? reframing advanced Parkinson's disease as a multidimensional state.Journal of neural transmission (Vienna, Austria : 1996) · 2026
    Review
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

14 authors.

Samantha DorranceEdmond J. Safra Program in Parkinson's Disease and Morton and Gloria Shulman Movement Disorders Clinic, University Health Network, Toronto, Ontario, Canada.ORCID https://orcid.org/0009-0002-2488-0244
Richa PatelEdmond J. Safra Program in Parkinson's Disease and Morton and Gloria Shulman Movement Disorders Clinic, University Health Network, Toronto, Ontario, Canada.ORCID https://orcid.org/0009-0004-6180-7892
Glenn T StebbinsDepartment of Neurological Sciences, Rush University Medical Center, Chicago, Illinois, USA.ORCID https://orcid.org/0000-0001-7905-9336
Jamie L AdamsDepartment of Neurology, University of Rochester, Rochester, New York, USA.ORCID https://orcid.org/0000-0002-1170-6688
Allison M AllenDuke University Medical Center, Durham, North Carolina, USA.ORCID https://orcid.org/0000-0002-2039-6773
Tara HastingsSanofi, Bridgewater, New Jersey, USA.
Soania MathurParkinson's Research Advocate, Toronto, Ontario, Canada.ORCID https://orcid.org/0000-0002-6224-7573
Onanong PhokaewvarangkulChulalongkorn Centre of Excellence for Parkinson's Disease & Related Disorders, Department of Medicine, Faculty of Medicine, Chulalongkorn University and King Chulalongkorn Memorial Hospital, Thai Red Cross Society, Bangkok, Thailand.ORCID https://orcid.org/0000-0003-0060-9935
Gary RafaloffParkinson's Research Advocate, Westlake, Florida, USA.ORCID https://orcid.org/0000-0002-2625-2025
Rajasumi RajalingamEdmond J. Safra Program in Parkinson's Disease and Morton and Gloria Shulman Movement Disorders Clinic, University Health Network, Toronto, Ontario, Canada.ORCID https://orcid.org/0000-0002-2564-7375
Anette SchragDepartment of Clinical and Movement Neurosciences, UCL Institute of Neurology, University College London, London, UK.ORCID https://orcid.org/0000-0002-9872-6680
Christine SunEdmond J. Safra Program in Parkinson's Disease and Morton and Gloria Shulman Movement Disorders Clinic, University Health Network, Toronto, Ontario, Canada.
Jennifer MammenUniversity of Massachusetts, Dartmouth, Massachusetts, USA.ORCID https://orcid.org/0000-0001-7858-9183
Connie MarrasEdmond J. Safra Program in Parkinson's Disease and Morton and Gloria Shulman Movement Disorders Clinic, University Health Network, Toronto, Ontario, Canada.ORCID https://orcid.org/0000-0002-9236-9328

Funding

Michael J. Fox Foundation for Parkinson's Research MJFF-023274
6 · The paper itself

Abstract

backgroundLittle is known about how people with Parkinson's conceptualize "quality of life."

objectiveTo describe the meaning of "quality of life" from the perspective of people with Parkinson's.

methodsParticipants (N = 42) were asked "What does the term 'quality of life' mean to you?" Definitions were analyzed using inductive qualitative methods.

resultsQuality of life is captured in a framework illustrating how activities, experiences, and coping strategies generate positive feelings that collectively shape the mental state that defines quality of life.

conclusionsPeople with Parkinson's typically define what constitutes a good quality of life, with health status acting as an enabler (or barrier). Multiple factors, varying across individuals and potentially changing with circumstances, shape how people view their quality of life, and offer potential avenues for sustaining it. These personal, subjective and adaptive conceptualizations of quality of life should inform the design of interventions and measurement instruments.

Indexed as

Parkinson DiseaseQuality of LifeAdaptation, PsychologicalAgedAged, 80 and overFemaleHealth StatusHumansMaleMiddle AgedQualitative ResearchdefinitionParkinson's diseasepatient perspectivequalitativequality of life

Identifiers

PMID41518613
PMCPMC13306885

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

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.