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Participatory Design in Parkinson's Research with Focus on the Symptomatic Domains to be Measured

Article type: Research Article

Authors: Serrano, J. Artur; | Larsen, Frank | Isaacs, Tom | Matthews, Helen | Duffen, Joy | Riggare, Sara | Capitanio, Fulvio | Ferreira, Joaquim J.; | Domingos, Josefa; | Maetzler, Walter; | Graessner, Holm | SENSE-PARK Consortium

Affiliations: NST-Norwegian Centre for Integrated Care and Telemedicine, University Hospital North Norway, Tromsø, Norway | Department of Clinical Medicine, Faculty of Health Sciences, The Arctic University of Norway, Tromsø, Norway | The Cure Parkinson's Trust, London, UK | Karolinska Institute, Stockholm, Sweden | Portal Unidos contra el Parkinson, Spain | Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine, University of Lisbon, Portugal | CNS - Campus Neurológico Sénior, Torres Vedras, Portugal | Department of Neurodegenerative Diseases, Hertie Institute for Clinical Brain Research, University of Tuebingen, Germany | German Center for Neurodegenerative Diseases (DZNE), Germany | Institute for Medical Genetics and Applied Genomics, University of Tuebingen, Germany

Note: [] Correspondence to: J. Artur Serrano, University Hospital of North Norway, Norwegian Centre for Integrated Care and Telemedicine, P.O. Box 35, N-9038 Tromsø, Norway. Tel.: +47 9668 3435; Fax: +47 77 75 40 99; E-mail: [email protected]

Keywords: Parkinson's Disease (PD), People with Parkinson's (PwPs), participatory design, assessment strategies, biomarkers, chronic disease management, combined methods, degenerative disease, diagnostic markers, focus group, symptomatic domain, monitoring

DOI: 10.3233/JPD-140472

Journal: Journal of Parkinson's Disease, vol. 5, no. 1, pp. 187-196, 2015

Published: 2015
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Abstract

Background: There is a growing interest in the objective assessment of health related outcomes using technology providing quality measurements to be applied not only in daily clinical practice, but also in scientific research. Differences in the understandings of the condition and the terminology used between people with Parkinson's (PwPs), clinicians and technical developers may influence the progress of a participatory design process. Objective: This paper reports on a participatory design process to achieve a consensus among PwPs, clinicians and technologists over the selection of a set of symptomatic domains to be continuously assessed, in order to provide results relevant to both PwPs and clinicians. Methods: The methods used were a Web based user survey, end-user focus groups, ranking by combined methods, a Delphi process performed among clinicians and scientists, and prioritization of the results in a concertation workshop for PwPs, clinicians and technologists. Results: The following symptomatic domains were commonly agreed by PwPs and clinicians to be of central importance in a system of continuous assessment: hypokinesia/bradykinesia, tremor, sway, gait, sleep and cognition. This list satisfied both the needs of the PwPs and the concerns of the clinicians regarding the means of advancing new strategies in assessment and interventions in PD. Conclusions: A participatory design strategy allowed the definition of a consensual list of symptomatic domains. Both the strategy and the achieved results may be of relevance for similar interdisciplinary approaches in the field of PD using a participatory design involving patients, clinicians and technologists.

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