Meaningful digital mobility outcomes for people with Parkinson's disease: Insights grounded in diverse lived experience.
15 affiliations
- 1Population Health Sciences Institute, Faculty of Medical Sciences, Newcastle University, Newcastle Upon Tyne, UK.
- 2NIHR Newcastle Biomedical Research Centre, Newcastle University, The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.
- 3Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University, Newcastle Upon Tyne, UK.
- 4Insight for Data Analytics, University College Dublin, Dublin, Ireland.
- 5School of Medicine, Trinity College Dublin, Dublin, Ireland.
- 6Department of Public Health and Primary Care, School of Clinical Medicine, University of Cambridge, Cambridge, England.
- 7Mobilise-D Patient and Public Advisory Group, Newcastle upon Tyne, UK.
- 8Wolfson Institute of Population Health, Centre for Preventive Neurology, Queen Mary University of London, London, UK.
- 9Department of Neurology, The Royal London Hospital, Barts Health NHS Trust, London, UK.
- 10Department of Neurology, University Hospital Schleswig-Holstein, Kiel University, Kiel, Germany.
- 11Department of Rehabilitation Sciences, Research Group for Neurorehabilitation (eNRGy), KU Leuven, Leuven, Belgium.
- 12Department of Molecular Neurology, University Hospital Erlangen, Erlangen, Germany.
- 13Fraunhofer Institute for Integrated Circuits IIS, Erlangen, Germany.
- 14Laboratory for Early Markers of Neurodegeneration, Center for the study of Movement, Cognition and Mobility, Sagol School of Neuroscience, Faculty of Medicine and Health Sciences, Neurological Institute, Tel Aviv Medical Center, Tel Aviv University, Tel Aviv, Israel.
- 15Newcastle upon Tyne Hospitals NHS Foundations Trust, Newcastle upon Tyne, UK.
Abstract
BackgroundDigital mobility outcomes (DMOs) have been cited as potential clinical endpoints for trials in Parkinson's disease (PD). Current evidence from the Mobilise-D consortium suggests that selected DMOs are technically valid, with emerging research on their clinical validity. However, regulatory qualification of DMOs requires additional evidence of their meaningfulness to people with PD.ObjectiveTo identify meaningful DMOs by understanding how mobility symptoms impact aspects of health that matter to people with PD.MethodsPurposive sampling recruited a diverse sample of people with PD to participate in semi-structured interviews. Content analysis identified frequent and bothersome mobility symptoms and their impacts on meaningful aspects of health. Twelve experts mapped meaningful symptoms to relevant DMOs through a nominal group consensus.ResultsSeventy-two people with PD participated, inclusive of under-served groups: ethnic minorities (14%) or LGBTQIA + backgrounds (14%), in older age (3%) or with young-onset PD (13%), living rurally (31%) or in a deprived area (19%). Shuffling gait, bradykinesia and balance issues were the most frequent symptoms, and the most bothersome and impactful on meaningful aspects of health (i.e., activities of daily living, life-space mobility, emotional wellbeing) among participants who experienced them. Less frequent, but still highly bothersome and impactful symptoms included freezing of gait, fatigue and weakness. Expert consensus suggested that walking speed, stride length and turn duration were the most relevant DMOs to reflect these meaningful symptoms.ConclusionFindings offer an inclusive, meaningful framework for digital assessment of mobility in PD, grounded in lived experience and consistent with regulatory guidance.
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BibTeX
@article{lumsdon2026meaningful,
title = {{Meaningful digital mobility outcomes for people with Parkinson's disease: Insights grounded in diverse lived experience.}},
author = {Jack Lumsdon and Ríona Mc Ardle and Megan Hanrahan and Alison Keogh and Cameron Wilson and Tova Gur Arieh and Alastair J Noyce and Essa Bhadra and Johanna Graeber and Lova Hulst and Moran Gilat and Heiko Gassner and Jürgen Winkler and Walter Maetzler and Anat Mirelman and Alison J Yarnall and Lynn Rochester and Katie Brittain},
journal = {Journal of Parkinson's disease},
year = {2026},
month = oct,
doi = {10.1177/1877718x261494917},
url = {https://europepmc.org/article/MED/42852984},
note = {CC BY},
}
RIS
TY - JOUR
TI - Meaningful digital mobility outcomes for people with Parkinson's disease: Insights grounded in diverse lived experience.
AU - Jack Lumsdon
AU - Ríona Mc Ardle
AU - Megan Hanrahan
AU - Alison Keogh
AU - Cameron Wilson
AU - Tova Gur Arieh
AU - Alastair J Noyce
AU - Essa Bhadra
AU - Johanna Graeber
AU - Lova Hulst
AU - Moran Gilat
AU - Heiko Gassner
AU - Jürgen Winkler
AU - Walter Maetzler
AU - Anat Mirelman
AU - Alison J Yarnall
AU - Lynn Rochester
AU - Katie Brittain
PY - 2026
DA - 2026/10/09
JO - Journal of Parkinson's disease
DO - 10.1177/1877718x261494917
UR - https://europepmc.org/article/MED/42852984
AB - BackgroundDigital mobility outcomes (DMOs) have been cited as potential clinical endpoints for trials in Parkinson's disease (PD). Current evidence from the Mobilise-D consortium suggests that selected DMOs are technically valid, with emerging research on their clinical validity. However, regulatory qualification of DMOs requires additional evidence of their meaningfulness to people with PD.ObjectiveTo identify meaningful DMOs by understanding how mobility symptoms impact aspects of health that matter to people with PD.MethodsPurposive sampling recruited a diverse sample of people with PD to participate in semi-structured interviews. Content analysis identified frequent and bothersome mobility symptoms and their impacts on meaningful aspects of health. Twelve experts mapped meaningful symptoms to relevant DMOs through a nominal group consensus.ResultsSeventy-two people with PD participated, inclusive of under-served groups: ethnic minorities (14%) or LGBTQIA + backgrounds (14%), in older age (3%) or with young-onset PD (13%), living rurally (31%) or in a deprived area (19%). Shuffling gait, bradykinesia and balance issues were the most frequent symptoms, and the most bothersome and impactful on meaningful aspects of health (i.e., activities of daily living, life-space mobility, emotional wellbeing) among participants who experienced them. Less frequent, but still highly bothersome and impactful symptoms included freezing of gait, fatigue and weakness. Expert consensus suggested that walking speed, stride length and turn duration were the most relevant DMOs to reflect these meaningful symptoms.ConclusionFindings offer an inclusive, meaningful framework for digital assessment of mobility in PD, grounded in lived experience and consistent with regulatory guidance.
SN - 1877-7171
SN - 1877-718X
ER -