Skip to main content
SpringerLink
Log in

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

  • Published:
Quality of Life Research Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. Lees, A. J., Hardy, J., & Revesz, T. (2009). Parkinson’s disease. Lancet, 373(9680), 2055–2066.

    Article  PubMed  CAS  Google Scholar 

  2. Chaudhuri, K. R., Healy, D. G., & Schapira, A. H. (2006). Non-motor symptoms of Parkinson’s disease: Diagnosis and management. Lancet Neurology, 5(3), 235–245.

    Article  PubMed  Google Scholar 

  3. Karlsen, K. H., Larsen, J. P., Tandberg, E., & Maeland, J. G. (1999). Influence of clinical and demographic variables on quality of life in patients with Parkinson’s disease. Journal of Neurology, Neurosurgery and Psychiatry, 66(4), 431–435.

    Article  CAS  Google Scholar 

  4. Soh, S. E., Morris, M. E., & McGinley, J. L. (2011). Determinants of health-related quality of life in Parkinson’s disease: A systematic review. Parkinsonism and Related Disorders, 17(1), 1–9.

    Article  PubMed  Google Scholar 

  5. Gruber-Baldini, A. L., Ye, J., Anderson, K. E., & Shulman, L. M. (2009). Effects of optimism/pessimism and locus of control on disability and quality of life in Parkinson’s disease. Parkinsonism and Related Disorders, 15(9), 665–669.

    Article  PubMed  Google Scholar 

  6. Koplas, P. A., Gans, H. B., Wisely, M. P., Kuchibhatla, M., Cutson, T. M., Gold, D. T., et al. (1999). Quality of life and Parkinson’s disease. Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 54(4), M197–M202.

    Article  CAS  Google Scholar 

  7. Wallhagen, M. I., & Brod, M. (1997). Perceived control and well-being in Parkinson’s disease. Western Journal of Nursing Research, 19(1), 11–25. (discussion 25–31).

    Article  PubMed  CAS  Google Scholar 

  8. Charlton, G. S., & Barrow, C. J. (2002). Coping and self-help group membership in Parkinson’s disease: An exploratory qualitative study. Health & Social Care in the Community, 10(6), 472–478.

    Article  Google Scholar 

  9. Andersson, I., & Sidenvall, B. (2001). Case studies of food shopping, cooking and eating habits in older women with Parkinson’s disease. Journal of Advanced Nursing, 35(1), 69–78.

    Article  PubMed  CAS  Google Scholar 

  10. Keller, H. H., Edward, H. G., & Cook, C. (2006). Mealtime experiences of families with dementia. American Journal of Alzheimers Disease and Other dementias, 21(6), 431–438.

    Article  Google Scholar 

  11. Lim, A., Leow, L., Huckabee, M. L., Frampton, C., & Anderson, T. (2008). A pilot study of respiration and swallowing integration in Parkinson’s disease: “On” and “off” levodopa. Dysphagia, 23(1), 76–81.

    Article  PubMed  Google Scholar 

  12. Miller, N., Noble, E., Jones, D., & Burn, D. (2006). Hard to swallow: Dysphagia in Parkinson’s disease. Age and Ageing, 35(6), 614–618.

    Article  PubMed  Google Scholar 

  13. Low, J. (2006). Communication problems between researchers and informants with speech difficulties: Methodological and analytic issues. Field Methods, 18(2), 153–171.

    Article  Google Scholar 

  14. Hobart, J. C., Cano, S. J., Zajicek, J. P., & Thompson, A. J. (2007). Rating scales as outcome measures for clinical trials in neurology: Problems, solutions, and recommendations. Lancet Neurology, 6(12), 1094–1105.

    Article  PubMed  Google Scholar 

  15. Mitchell, S. L., Harper, D. W., Lau, A., & Bhalla, R. (2000). Patterns of outcome measurement in Parkinson’s disease clinical trials. Neuroepidemiology, 19(2), 100–108.

    Article  PubMed  CAS  Google Scholar 

  16. Chalmers, I. (2007). The Alzheimer’s society, drug firms, and public trust. BMJ, 335, 400.

    Article  Google Scholar 

  17. Food and Drug Administration. (2009). Patient-reported outcome measures: Use in medicinal product development to support labelling claims. Washington, DC.

  18. Nisenzon, A. N., Robinson, M. E., Bowers, D., Banou, E., Malaty, I., & Okun, M. S. (2011). Measurement of patient-centered outcomes in Parkinson’s disease: What do patients really want from their treatment? Parkinsonism and Related Disorders, 17(2), 89–94.

    Article  PubMed  Google Scholar 

  19. Kane, M., & Trochim, W. M. K. (2007). Concept mapping for planning and evaluation. Thousand Oaks: Sage Publications, Inc.

    Google Scholar 

  20. Trochim, W. M. K. (1989). An introduction to concept mapping for planning and evaluation. Evaluation and Program Planning, 12(1), 1–16.

    Article  Google Scholar 

  21. Akhtar-Danesh, N., Baumann, A., & Cordingley, L. (2008). Q-methodology in nursing research: A promising method for the study of subjectivity. Western Journal of Nursing Research, 30(6), 759–773.

    Article  PubMed  Google Scholar 

  22. Patton, M. Q. (2002). Qualitative evaluation and research methods (3rd ed.). Thousand Oaks: Sage Publications.

    Google Scholar 

  23. Hoehn, M. M., & Yahr, M. D. (1967). Parkinsonism: Onset, progression and mortality. Neurology, 17(5), 427–442.

    PubMed  CAS  Google Scholar 

  24. Goetz, C. G., Poewe, W., Rascol, O., Sampaio, C., Stebbins, G. T., Counsell, C., et al. (2004). Movement Disorder Society Task Force report on the Hoehn and Yahr Staging Scale: Status and recommendations. Movement Disorders, 19(9), 1020–1028.

    Article  PubMed  Google Scholar 

  25. Hagell, P., & Sandlund, B. (2000). Patients’ self-assessment of disease and symptom severity in Parkinson’s disease. Quality of Life Research, 9(3), 285.

    Google Scholar 

  26. Hobson, J. P., Edwards, N. I., & Meara, R. J. (2001). The Parkinson’s Disease Activities of Daily Living Scale: A new simple and brief subjective measure of disability in Parkinson’s disease. Clinical Rehabilitation, 15(3), 241–246.

    Article  PubMed  CAS  Google Scholar 

  27. Severens, P. (1995). Handbook: Concept mapping. Amsterdam: National Centre for Mental Health/Talcott BV.

    Google Scholar 

  28. Knutsson, I., Rydstrom, H., Reimer, J., Nyberg, P., & Hagell, P. (2010). Interpretation of response categories in patient-reported rating scales: A controlled study among people with Parkinson’s disease. Health and Quality of Life Outcomes, 8, 61.

    Article  PubMed  Google Scholar 

  29. Trochim, W. M., Stillman, F. A., Clark, P. I., & Schmitt, C. L. (2003). Development of a model of the tobacco industry’s interference with tobacco control programmes. Tobacco Control, 12(2), 140–147.

    Article  PubMed  CAS  Google Scholar 

  30. Rahman, S., Griffin, H. J., Quinn, N. P., & Jahanshahi, M. (2008). Quality of life in Parkinson’s disease: The relative importance of the symptoms. Movement Disorders, 23(10), 1428–1434.

    Article  PubMed  Google Scholar 

  31. Friedman, J. H., Brown, R. G., Comella, C., Garber, C. E., Krupp, L. B., Lou, J. S., et al. (2007). Fatigue in Parkinson’s disease: A review. Movement Disorders, 22(3), 297–308.

    Article  PubMed  Google Scholar 

  32. Peto, V., Jenkinson, C., Fitzpatrick, R., & Greenhall, R. (1995). The development and validation of a short measure of functioning and well being for individuals with Parkinson’s disease. Quality of Life Research, 4(3), 241–248.

    Article  PubMed  CAS  Google Scholar 

  33. Ware, J. E., Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30(6), 473–483.

    Article  PubMed  Google Scholar 

  34. Hagell, P., Reimer, J., & Nyberg, P. (2009). Whose quality of life? Ethical implications in patient-reported health outcome measurement. Value Health, 12(4), 613–617.

    Article  PubMed  Google Scholar 

  35. Lee, M. A., Walker, R. W., Hildreth, A. J., & Prentice, W. M. (2006). Individualized assessment of quality of life in idiopathic Parkinson’s disease. Movement Disorders, 21(11), 1929–1934.

    Article  PubMed  Google Scholar 

  36. Osborne, R. H., Elsworth, G. R., & Whitfield, K. (2007). The Health Education Impact Questionnaire (heiQ): An outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions. Patient Education and Counseling, 66(2), 192–201.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

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.

Author information

Authors and Affiliations

  1. Department of Health Sciences, Lund University, P.O. Box 157, 221 00, Lund, Sweden

    Catharina Sjödahl Hammarlund, Maria H. Nilsson & Peter Hagell

  2. Department of Neurology, Skåne University Hospital, Lund, Sweden

    Peter Hagell

  3. School of Health and Society, Kristianstad University, Kristianstad, Sweden

    Peter Hagell

Authors
  1. Catharina Sjödahl Hammarlund
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Maria H. Nilsson
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Peter Hagell
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Catharina Sjödahl Hammarlund.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Sjödahl Hammarlund, C., Nilsson, M.H. & Hagell, P. Measuring outcomes in Parkinson’s disease: a multi-perspective concept mapping study. Qual Life Res 21, 453–463 (2012). https://doi.org/10.1007/s11136-011-9995-3

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-011-9995-3

Keywords

Search

Navigation