hkr.sePublications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Conceptualizing and prioritizing clinical trial outcomes from the perspectives of people with Parkinson’s disease versus health care professionals: a concept mapping study
Kristianstad University, School of Health and Society. Kristianstad University, Research Environment PRO-CARE.
Lund University.
Lund University.
Concept Systems, Inc., Ithaca, NY.
Show others and affiliations
2014 (English)In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 23, no 6, 1687-1700 p.Article in journal (Refereed) Published
Abstract [en]

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 (m12 = 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.

Place, publisher, year, edition, pages
2014. Vol. 23, no 6, 1687-1700 p.
Keyword [en]
Concept mapping, Mixed-method, Outcomes, Parkinson’s disease, Qualitative, Quantitative
National Category
Nursing
Identifiers
URN: urn:nbn:se:hkr:diva-11596DOI: 10.1007/s11136-013-0614-3ISI: 000339280700003PubMedID: 24390766OAI: oai:DiVA.org:hkr-11596DiVA: diva2:684349
Funder
Swedish Research CouncilForte, Swedish Research Council for Health, Working Life and Welfare
Available from: 2014-01-08 Created: 2014-01-08 Last updated: 2014-12-07Bibliographically approved

Open Access in DiVA

No full text

Other links

Publisher's full textPubMed

Search in DiVA

By author/editor
Sjödahl Hammarlund, CatharinaHagell, Peter
By organisation
School of Health and SocietyResearch Environment PRO-CAREAvdelningen för Hälsovetenskap IForskningsplattformen Hälsa i samverkan
In the same journal
Quality of Life Research
Nursing

Search outside of DiVA

GoogleGoogle Scholar

Altmetric score

Total: 142 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf