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Conceptualizing and prioritizing clinical trial outcomes from the perspectives of people with Parkinson’s disease versus health care professionals: a concept mapping study

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Abstract

Background

Focusing clinical investigations on outcomes that are meaningful from an end-user perspective is central in clinical research, particularly in chronic disorders such as Parkinson’s disease (PD). However, little is known about how end-users such as people with PD (PwPD) and health care professionals (HCPs) view and prioritize therapeutic outcomes.

Purpose

To compare the perspectives of PwPD and HCPs regarding prioritized areas for outcome measurement in clinical PD trials.

Methods

Concept mapping was used to identify prioritized outcomes (statements) through focus groups (n = 27; 12 PwPD, 12 HCPs, three researchers), statement sorting and importance rating (n = 38; 19 PwPD, 19 HCPs), followed by quantitative (multidimensional scaling, cluster analysis, procrustes analysis) and qualitative analysis.

Results

Sorting of 99 statements by PwPD and HCPs yielded 2D maps (PwPD/HCPs stress values, 0.31/0.21) with eight clusters per group. The correlation between raw sorting data of PwPD and HCPs was 0.80, and there was a significant concordance (m 12 = 0.53; P < 0.001; i.e., r = 0.68) between the spatial arrangements in their respective maps. Qualitatively, the maps from the two groups represented partially different perspectives. There were no significant differences between PwPD and HCP item importance ratings.

Conclusion

Although similarities dominated, there were differences in how the relationships between items were perceived by the two groups, emanating from different perspectives, i.e., the clinical biomedical (“disease”) versus the lived experience (“illness”). This study illustrates the clinical importance of attention to the perspective of PwPD; taking this into account is likely to provide evidence from clinical investigations that are meaningful and interpretable for end-users.

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Acknowledgments

The authors wish to thank all participants for their cooperation, and J. Reimer, S. Lindskov and K. Wictorin for assistance in recruiting participants. The study was conducted within BAGADILICO (the Basal Ganglia Disorders Linnaeus Consortium) at Lund University, Sweden. The study was supported by the Swedish Research Council, the Swedish Parkinson Academy, the Faculty of Medicine at Lund University, Lund, Sweden, and the School of Health and Society, Kristianstad University, Kristianstad, 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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Authors and Affiliations

  1. The PRO-CARE Group, School of Health and Society, Kristianstad University, 291 88, Kristianstad, Sweden

    Catharina Sjödahl Hammarlund & Peter Hagell

  2. Department of Health Sciences, Lund University, Lund, Sweden

    Catharina Sjödahl Hammarlund & Maria H. Nilsson

  3. Department of Arts and Cultural Sciences, Ethnology, Lund University, Lund, Sweden

    Markus Idvall

  4. Concept Systems, Inc., Ithaca, NY, USA

    Scott R. Rosas

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  1. Catharina Sjödahl Hammarlund
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  2. Maria H. Nilsson
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  4. Scott R. Rosas
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  5. Peter Hagell
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Correspondence to Peter Hagell.

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Sjödahl Hammarlund, C., Nilsson, M.H., Idvall, M. et al. Conceptualizing and prioritizing clinical trial outcomes from the perspectives of people with Parkinson’s disease versus health care professionals: a concept mapping study. Qual Life Res 23, 1687–1700 (2014). https://doi.org/10.1007/s11136-013-0614-3

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