Measuring outcomes in Parkinson’s disease: a multi-perspective concept mapping study
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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.
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).
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.
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.
KeywordsConcept mapping Outcomes Parkinson’s disease Qualitative Quantitative
The authors wish to thank all participants for their cooperation, J. Reimer, S. Lindskov, and K. Wictorin for assistance in recruiting participants, and M. Miller and S. Smith for valuable discussions. The study was conducted within the BAGADILICO (the Basal Ganglia Disorders Linnaeus Consortium) research group at Lund University, Sweden. The study was supported by the Swedish Research Council, the Swedish Parkinson Academy, and the Faculty of Medicine at Lund University, Lund, Sweden. MHN was partly funded by the Strategic Research Area MultiPark at Lund University, and by the Swedish Council for Working Life and Social Research within the context of the Centre for Ageing and Supportive Environments (CASE), Lund University, Sweden.
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