Measuring outcomes in Parkinson's disease: a multi-perspective concept mapping study.

Research output: Contribution to journalArticle

Abstract

PURPOSE: To identify and develop a conceptual map of prioritized areas and to determine their relative importance for outcome measurement in clinical Parkinson's disease (PD) trials, from the perspectives of health care professionals and people with PD. METHOD: We used concept mapping, a qualitative/quantitative method consisting of three steps: item generation through focus groups (n = 27; 12 people with PD, 12 health care professionals, 3 researchers), item sorting and rating (n = 38; 19 people with PD, 19 health care professionals), and data analysis (multidimensional scaling, cluster analysis). RESULTS: Ninety-nine items and eight clusters were generated. Clusters representing Participation; Mobility and motor functioning; Cognitive and executive functioning; and Emotions were the most homogenous. Statements within clusters representing Energy and abilities; Autonomic dysfunctions; Sensory, speech and swallowing problems; and Neuropsychiatric symptoms also related to statements outside their respective clusters. Clusters rated most important were Participation and Mobility and motor functioning, and the highest rated items were quality of life, walking ability, and sleeping problems. CONCLUSION: By the use of concept mapping, a multi-perspective conceptual map of prioritized aspects for the outcome measurement in PD was defined. These findings provide an initial conceptual basis toward improved outcome measurement priorities in clinical PD trials.

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Subject classification (UKÄ) – MANDATORY

  • Physiotherapy
  • Nursing
  • Occupational Therapy
Original languageEnglish
Pages (from-to)453-463
JournalQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
Volume21
Issue numberAug 26
StatePublished - 2012
Peer-reviewedYes

Bibliographic note

The information about affiliations in this record was updated in December 2015. The record was previously connected to the following departments: Division of Occupational Therapy (Closed 2012) (013025000), Division of Nursing (Closed 2012) (013065000), Division of Physiotherapy (Closed 2012) (013042000)