title: Participatory design in Parkinson's research with focus on the symptomatic domains to be measured.
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.
authors.affiliation: 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.
authors.forename: J Artur
authors.initials: JA
authors.lastname: Serrano
authors.affiliation: NST-Norwegian Centre for Integrated Care and Telemedicine, University Hospital North Norway, Tromsø, Norway.
authors.forename: Frank
authors.initials: F
authors.lastname: Larsen
authors.affiliation: The Cure Parkinson's Trust, London, UK.
authors.forename: Tom
authors.initials: T
authors.lastname: Isaacs
authors.affiliation: The Cure Parkinson's Trust, London, UK.
authors.forename: Helen
authors.initials: H
authors.lastname: Matthews
authors.affiliation: The Cure Parkinson's Trust, London, UK.
authors.forename: Joy
authors.initials: J
authors.lastname: Duffen
authors.affiliation: Karolinska Institute, Stockholm, Sweden.
authors.forename: Sara
authors.initials: S
authors.lastname: Riggare
authors.affiliation: Portal Unidos contra el Parkinson, Spain.
authors.forename: Fulvio
authors.initials: F
authors.lastname: Capitanio
authors.affiliation: Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine, University of Lisbon, Portugal CNS - Campus Neurológico Sénior, Torres Vedras, Portugal.
authors.forename: Joaquim J
authors.initials: JJ
authors.lastname: Ferreira
authors.affiliation: Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine, University of Lisbon, Portugal CNS - Campus Neurológico Sénior, Torres Vedras, Portugal.
authors.forename: Josefa
authors.initials: J
authors.lastname: Domingos
authors.affiliation: Department of Neurodegenerative Diseases, Hertie Institute for Clinical Brain Research, University of Tuebingen, Germany German Center for Neurodegenerative Diseases (DZNE), Germany.
authors.forename: Walter
authors.initials: W
authors.lastname: Maetzler
authors.affiliation: Institute for Medical Genetics and Applied Genomics, University of Tuebingen, Germany.
authors.forename: Holm
authors.initials: H
authors.lastname: Graessner
mesh_terms: D000328:Adult; D000367:Age Factors; D000368:Aged; D000369:Aged, 80 and over; D002986:Clinical Trials as Topic; D005260:Female; D017144:Focus Groups; D006306:Health Surveys; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000503:physiopathology* / Q000628:therapy; D012107:Research Design; D013223:Statistics as Topic
keywords: Parkinson's Disease (PD); People with Parkinson's (PwPs); assessment strategies; biomarkers; chronic disease management; combined methods; degenerative disease; diagnostic markers; focus group; monitoring; participatory design; symptomatic domain