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Updated: Jul 4, 2025

Dynamic Digital Biomarkers of Motor and Cognitive Function in Parkinson's Disease
Published on: July 24, 2019
Holding back in communications with clinicians: Patient and care partner perspectives in Parkinson's disease
Roman Ayele1,2,3, Zachary A Macchi4, Sarah Jordan1
1Division of Geriatric Medicine, Department of Medicine, University of Colorado Anschutz Medical Campus, 12631 E. 17th Ave, Aurora, CO 80045, United States of America.
Objectives:
To describe how patients with Parkinson's disease (PD) and care partners choose to share or withhold information from clinicians.
Methods:
This is a qualitative, descriptive study nested within a multisite, randomized clinical trial of outpatient palliative care compared to standard neurologic care for PD. Interviews with patients (n = 30) and care partners (n = 30) explored experiences communicating with neurology clinicians. Thematic analyses identified themes relevant to patient-care partner-clinician communication.
Results:
There were four themes relevant to sharing and/or withholding information from clinicians: (1) Suppressing Concerns During Visits, (2) Care Partner Awareness of Patients' Communication Barriers due to Cognitive Impairment, (3) Limited Sharing of Sensitive or Intimate Issues by Patients and Care Partners, and (4) Patient and Care Partner Suggestions to Overcome 'Holding Back'.
Conclusion:
Limitations to communication between patients, care partners, and clinicians should be acknowledged and recognized in routine Parkinson's disease care to foster accurate disclosure of unmet palliative care and other needs. Triadic communication strategies may help patients and care partners talk about unmet palliative care needs.
Innovation:
By recognizing that cognitive impairment and sensitive topics can be barriers, clinicians can adjust or adopt targeted communication strategies for identifying and discussing care needs.
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