Quality of Life Research

, Volume 28, Issue 5, pp 1355–1364 | Cite as

Development of the Integrated Parkinson’s Care Network (IPCN): using co-design to plan collaborative care for people with Parkinson’s disease

  • Dorothy KesslerEmail author
  • Jennifer Hauteclocque
  • David Grimes
  • Tiago Mestre
  • Diane Côtéd
  • Clare Liddy



Parkinson’s disease (PD) is a progressive neurological illness that impacts various aspects of life. Integration of medical and self-management in a collaborative approach to care is needed to enhance functioning and the quality of life of PD patients. In developing an integrated care program at a tertiary PD clinic, we used a co-design process to gather stakeholder input.


This is a cross-sectional mixed methods study using surveys and interviews. Patient and caregiver participants from the clinic completed two questionnaires to evaluate perceived receipt of self-management support (Patient Assessment of Care for Chronic Conditions) and activation for managing their health condition (Patient or Caregiver Activation Measure®). A subset of these participants and healthcare providers took part in semi-structured interviews. Survey data were described and tested for relationships between patient characteristics and questionnaire scores using Spearman’s rank-order correlation. Interviews were analyzed using conventional content analysis.


Fifty-seven PD patients and thirty caregivers completed the questionnaires. Thirteen patients, six caregivers, and six healthcare providers were interviewed. 58% of participants were moderately to highly activated to manage their lives with PD. Participants’ perceptions of self-management support varied but was lacking in dimensions of goal-setting and follow-up support/coordination. Qualitative analysis revealed four overarching themes related to experiences of managing PD: activation, self-management support, coordinated care, and access to services.


This first study to explore patient activation in PD found high levels of activation but moderate to low levels of self-management support. The co-design process highlighted important aspects of a more collaborative approach to care.


Parkinson’s disease Self-management Collaborative care Co-design 



This work was supported by the University of Ottawa Brain and Mind Research Institute.

Compliance with ethical standards

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.


  1. 1.
    Wong, S. L., Gilmour, H., & Ramage-Morin, P. L. (2014). Parkinson’s disease: Prevalence, diagnosis and impact. Health Reports, 25(11), 10–14.Google Scholar
  2. 2.
    Welsh, M. (2008). Treatment challenges in Parkinson’s disease. Nurse Practitioner, 33(7), 32–38.CrossRefGoogle Scholar
  3. 3.
    Lyons, K. D. (2003). Self-management of Parkinson’s disease: Guidelines for program development and evaluation. Journal Physical & Occupational Therapy in Geriatrics, 21(3), 17–31.CrossRefGoogle Scholar
  4. 4.
    Lorig, K. R., & Holman, H. R. (2003). Self-management education: History, definition, outcomes, and mechanisms. Annals of Behavioral Medicine, 26(1):1–7.CrossRefGoogle Scholar
  5. 5.
    Greene, J., Hibbard, J. H., Sacks, R., Overton, V., & Parrotta, C. D. (2015). When patient activation levels change, health outcomes and costs change, too. Health Affairs, 34(3), 431–437.CrossRefGoogle Scholar
  6. 6.
    Mosen, D. M., Schmittdiel, J., Hibbard, J., Sobel, D., Remmers, C., & Bellows, J. (2007). Is patient activation associated with outcomes of care for adults with chronic conditions? Journal of Ambulatory Care Management, 30(1), 21–29.CrossRefGoogle Scholar
  7. 7.
    Aung, E., Donald, M., Williams, G. M., Coll, J. R., & Doi, S. A. R. (2016). Influence of patient-assessed quality of chronic illness care and patient activation on health-related quality of life. International Journal for Quality in Health Care, 28(3), 306–310.CrossRefGoogle Scholar
  8. 8.
    McCusker, J., Lambert, S. D., Cole, M. G., Ciampi, A., Strumpf, E., Freeman, E. E., et al. (2016). Activation and self-efficacy in a randomized trial of a depression self-care intervention. Health Education & Behavior, 43(6), 716–725.CrossRefGoogle Scholar
  9. 9.
    Packer, T. L., Kephart, G., Ghahari, S., Audulv, Å, Versnel, J., & Warner, G. (2015). The patient activation measure: A validation study in a neurological population. Quality of Life Research, 24(7), 1587–1596.CrossRefGoogle Scholar
  10. 10.
    Kessler, D., & Liddy, C. (2017). Self-management support programs for persons with Parkinson’s disease: An integrative review. Patient Education and Counseling, 100(10), 1787–1795.CrossRefGoogle Scholar
  11. 11.
    Corrigan, J. M., & Adams, K., (Eds.), (2003). Priority areas for national action: Transforming health care quality. Washington D.C.: National Academies Press.Google Scholar
  12. 12.
    van der Eijk, M., Faber, M. J., Post, B., Okun, M. S., Schmidt, P., Munneke, M., et al. (2015). Capturing patients’ experiences to change Parkinson’s disease care delivery: A multicenter study. Journal of Neurology, 262(11), 2528–2538.CrossRefGoogle Scholar
  13. 13.
    Ouwens, M., Wollersheim, H., Hermens, R., Hulscher, M., & Grol, R. (2005). Integrated care programmes for chronically ill patients: A review of systematic reviews. The International Society for Quality in Health Care, 17(2), 141–146.CrossRefGoogle Scholar
  14. 14.
    Bate, P., & Robert, G. (2006). Experience-based design: From redesigning the system around the patient to co-designing services with the patient. Quality and Safety in Health Care, 15(5), 307–310.CrossRefGoogle Scholar
  15. 15.
    Donetto, S., Pierri, P., Tsianakas, V., & Robert, G. (2015). Experience based co-design and healthcare improvement: Realizing participatory design in the public sector. Design Journal, 18(2), 227–248.CrossRefGoogle Scholar
  16. 16.
    Lam Andy, B. D. (2015). Enhancing service development and service delivery through co-design. Voluntary Sector Review, 6(1), 61–80.CrossRefGoogle Scholar
  17. 17.
    Dalrymple-Alford, J. C., MacAskill, M. R., Nakas, C. T., Livingston, L., Graham, C., Crucian, G. P., et al. (2010). The MoCA well-suited screen for cognitive impairment in Parkinson disease. Neurology, 75(19), 1717–1725.CrossRefGoogle Scholar
  18. 18.
    Hibbard, J. H., Mahoney, E. R., Stockard, J., & Tusler, M. (2005). Development and testing of a short form of the patient activation measure. Health Services Research, 40(6p1), 1918–1930.CrossRefGoogle Scholar
  19. 19.
    Glasgow, R. E., Wagner, E. H., Schaefer, J., Mahoney, L. D., Reid, R. J., & Greene, S. M. (2005). Development and validation of the patient assessment of chronic illness care (PACIC). Medical Care, 43(5), 436–444.CrossRefGoogle Scholar
  20. 20.
    Skolasky, R. L., Green, A. F., Scharfstein, D., Boult, C., Reider, L., & Wegener, S. T. (2010). Psychometric properties of the patient activation measure among multimorbid older adults. Health Services Research, 46(2), 457–478.CrossRefGoogle Scholar
  21. 21.
    Schmittdiel, J., Mosen, D. M., Glasgow, R. E., Hibbard, J., Remmers, C., & Bellows, J. (2008). Patient assessment of chronic illness care (PACIC) and improved patient-centered outcomes for chronic conditions. Journal of General Internal Medicine, 23(1), 77–80.CrossRefGoogle Scholar
  22. 22.
    Rick, J., Rowe, K., Hann, M., Sibbald, B., Reeves, D., Roland, M., et al. (2012). Psychometric properties of the patient assessment of chronic illness care measure: Acceptability, reliability and validity in United Kingdom patients with long-term conditions. BMC Health Service Research, 12, 293.CrossRefGoogle Scholar
  23. 23.
    Fowles, J. B., Terry, P., Xi, M., Hibbard, J., Bloom, C. T., & Harvey, L. (2009). Measuring self-management of patients’ and employees’ health: Further validation of the Patient Activation Measure (PAM) based on its relation to employee characteristics. Patient Education and Counseling, 77(1), 116–122.CrossRefGoogle Scholar
  24. 24.
    Shortell, S. M., Poon, B. Y., Ramsay, P. P., Rodriguez, H. P., Ivey, S. L., Huber, T., et al. (2017). A multilevel analysis of patient engagement and patient-reported outcomes in primary care practices of accountable care organizations. Journal of General Internal Medicine, 32(6), 640–647.CrossRefGoogle Scholar
  25. 25.
    Mukaka, M. M. (2012). A guide to appropriate use of correlation coefficient in medical research. Malawi Medical Journal, 24(3), 69–71.Google Scholar
  26. 26.
    IBM, SPSS Statistics v.24, (2016).Google Scholar
  27. 27.
    Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288. Scholar
  28. 28.
    NVivo qualitative data analysis Software. Version 11. QSR International Pty Ltd. 2015.Google Scholar
  29. 29.
    Stepleman, L., Rutter, M.-C., Hibbard, J., Johns, L., Wright, D., & Hughes, M. (2010). Validation of the patient activation measure in a multiple sclerosis clinic sample and implications for care. Disability and Rehabilitation, 32(19), 1558–1567.CrossRefGoogle Scholar
  30. 30.
    Merluzzi, T. V., Philip, E. J., Vachon, D. O., & Heitzmann, C. A. (2011). Assessment of self-efficacy for caregiving: The critical role of self-care in caregiver stress and burden. Palliative & Supportive Care, 9(1), 15–24.CrossRefGoogle Scholar
  31. 31.
    National Institue for Helath and Care Excellence. Parkinson’s disease in adults. NICE guideline [NG71]. (2017). Available at: Accessed December 18, 2017.
  32. 32.
    Foster, E. R., Bedekar, M., & Tickle-Degnen, L. (2014). Systematic review of the effectiveness of occupational therapy-related interventions for people with Parkinson’s disease. The American Journal of Occupational Therapy, 68(1), 39–49.CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.School of Rehabilitation TherapyQueen’s UniversityKingstonCanada
  2. 2.C.T. Lamont Primary Health Care Research CentreBruyère Research InstituteOttawaCanada
  3. 3.Ottawa Hospital Research InstituteOttawaCanada
  4. 4.The University of Ottawa Brain and Mind Research InstituteUniversity of OttawaOttawaCanada
  5. 5.Department of Family MedicineUniversity of OttawaOttawaCanada

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