Evidence map›Paper›PMID 42160536›Full record

ArticleJMIR formative research2026

Comparing Stakeholders' Perspectives on Parkinson Disease Management and Digital Technologies: Exploratory International Survey.

Jamie Linnea Luckhaus, Anna Kharko, Charlotte Blease, Maria-Luisa Almarcha-Menargues, Natalia Del Campo, Sofia Balula Dias, Beatriz Alves, Björn H Falkenburger, Leontios Hadjileontiadis, Maria Hägglund and 2 more

Abstract read
In one paragraph

Article in JMIR formative research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing 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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

12 authors.

Jamie Linnea LuckhausDepartment of Women's and Children's Health, Participatory eHealth and Health Data, Faculty of Medicine, Uppsala University, MTC-huset, Dag Hammarskjölds väg 14B, 1 tr, Uppsala, 75237, Sweden, 46 0729999381.ORCID 0009-0000-2442-2775
Anna KharkoDepartment of Women's and Children's Health, Participatory eHealth and Health Data, Faculty of Medicine, Uppsala University, MTC-huset, Dag Hammarskjölds väg 14B, 1 tr, Uppsala, 75237, Sweden, 46 0729999381.ORCID 0000-0003-0908-6173
Charlotte BleaseDepartment of Women's and Children's Health, Participatory eHealth and Health Data, Faculty of Medicine, Uppsala University, MTC-huset, Dag Hammarskjölds väg 14B, 1 tr, Uppsala, 75237, Sweden, 46 0729999381.ORCID 0000-0002-0205-1165
Maria-Luisa Almarcha-MenarguesNeurology Department, Movement Disorders Unit, Hospital Ruber Internacional, Madrid, Spain.ORCID 0000-0002-4476-7014
Natalia Del CampoNeuroToul Center of Excellence in Neurodegeneration (COEN) of Toulouse, University Hospital of Toulouse, Toulouse, Occitanie, France.ORCID 0000-0003-2009-1379
Sofia Balula DiasCenter of Interdisciplinary Study of Human Performance (CIPER), Faculdade de Motricidade Humana, University of Lisbon, Lisbon, Portugal.ORCID 0000-0002-8239-583X
Beatriz AlvesFaculdade de Motricidade Humana, University of Lisbon, Lisbon, Portugal.ORCID 0009-0003-9127-2991
Björn H FalkenburgerDepartment of Neurology, Faculty of Medicine and University Hospital Carl Gustav Carus, Technische Universität Dresden, Dresden, Saxony, Germany.ORCID 0000-0002-2387-526X
Leontios HadjileontiadisElectrical & Computer Engineering Department, Aristotle University of Thessaloniki, Athens, Central Macedonia, Greece.ORCID 0000-0002-9932-9302
Maria HägglundDepartment of Women's and Children's Health, Participatory eHealth and Health Data, Faculty of Medicine, Uppsala University, MTC-huset, Dag Hammarskjölds väg 14B, 1 tr, Uppsala, 75237, Sweden, 46 0729999381.ORCID 0000-0002-6839-3651
Sara RiggareDepartment of Women's and Children's Health, Participatory eHealth and Health Data, Faculty of Medicine, Uppsala University, MTC-huset, Dag Hammarskjölds väg 14B, 1 tr, Uppsala, 75237, Sweden, 46 0729999381.ORCID 0000-0002-2256-7310
Therese Scott DuncanDepartment of Women's and Children's Health, Participatory eHealth and Health Data, Faculty of Medicine, Uppsala University, MTC-huset, Dag Hammarskjölds väg 14B, 1 tr, Uppsala, 75237, Sweden, 46 0729999381.ORCID 0000-0003-4031-1965

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Parkinson disease (PD) is a progressive neurodegenerative disorder that poses complex challenges for persons with PD, informal caregivers, and health care professionals. With growing interest in digital and predictive artificial intelligence (AI) tools for disease management, understanding the needs and digital readiness of these stakeholder groups is crucial. Objective: This work aims to (1) identify digital practices for PD management among persons with PD, at-risk individuals, caregivers, and health care professionals; (2) compare these practices across groups; (3) explore stakeholder desires for AI-based tools; and (4) assess alignments and gaps to inform tailored AI solutions. Methods: An anonymous cross-sectional online survey of an exploratory nature was distributed (from December 2024 to October 2025) in 5 languages and completed by 255 respondents. Descriptive statistics summarized responses to 41 questions, including stakeholder-specific items. χ2 tests were performed to examine stakeholder differences in desired AI features. Results: Interest in predictive AI was high across stakeholder groups. Symptom tracking was the most desired feature (selected by more than 76% of the respondents), and personalized treatment recommendations came second for both persons with PD and health care professionals; however, stakeholder priorities diverged in other areas. Health care professionals rated improving patient and informal caregiver engagement as significantly more important than persons with PD did, χ21 (n=205)=34.78, P<.001, and Cramer V=0.41. Despite considerable interest, the reported use of digital tools was limited, as most persons with PD did not use symptom-tracking apps or wearables, nor were they currently monitoring their condition, although many expressed intentions to begin. Conclusions: While predictive AI tools were viewed positively across groups, there were significant gaps in stakeholder preferences, highlighting the importance of tailored, context-aware design. Early diagnosis was not prioritized by persons with PD or health care professionals, likely reflecting the complexity of diagnosing PD in the absence of disease-modifying therapies. Coupled with the emphasis placed on preventive lifestyle guidance by persons with PD and those at risk, this highlights the importance of actionability in AI-based monitoring and prediction. Such actionability may also enhance perceived relevance and uptake, given that reported interest in digital health tools and self-tracking exceeded actual use. These findings offer early-stage insight to guide the development of future AI-based solutions for PD.

Indexed as

Digital TechnologyDisease ManagementParkinson DiseaseStakeholder ParticipationAdultAgedArtificial IntelligenceCaregiversCross-Sectional StudiesDigital HealthFemaleHumansMaleMiddle AgedSurveys and QuestionnairesAIartificial intelligenceParkinson diseasepatient perspectivespredictive AIself-carestakeholder perspectives

Identifiers

PMID42160536
PMCPMC13189255

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.