# Ethics of Patients and Care Partners Perspectives on Personality Change in Parkinsons disease and Deep Brain Stimulation

> **NIH NIH R01** · CLEVELAND CLINIC LERNER COM-CWRU · 2020 · $411,095

## Abstract

PROJECT SUMMARY
In our work with patients with neurological disorders, we often encounter patients and families who are afraid.
They are afraid that due to their neurodegenerative disorder or potential treatment, such as neurosurgery, they
will cease to exist – they will no longer be who they “are”. Clinicians typically refer to this construct as
personality or characteristic patterns of thinking, feeling, and behaving. Controversy and uncertainty exist
regarding the nature and extent of personality changes following deep brain stimulation (DBS) for the treatment
of Parkinson's disease (PD). The proposed study systematically explores patients' and care partners' (e.g.,
family members, friends) perspectives and experiences regarding the preservation of their individually elicited
most valued personality characteristics at different stages of PD and over the course of DBS. These narrative
lay understandings of personality arising from the participants' lived historical experiences (which may not
conform to any existing theories) are highly individualized and value laden. Systematic study of the patients'
and care partners' experiences of changes in their most valued personality characteristics is ethically
imperative and central to informed consent. The proposed study will employ a mixed methodology
incorporating qualitative and quantitative analyses of three groups of 50 patients with PD and their care
partners (patients within one year of diagnosis, within 5 -7 years of diagnosis, and those undergoing DBS).
Semi-structured interviews will be conducted to identify the core personality characteristics patients and care
partners most fear losing (e.g., extroversion, humility). These data will be supplemented with visual analogue
scales derived from the qualitative data as well as standard personality and PD-specific metrics. The data from
the proposed study will illuminate participant's most valued personality characteristics, identify if existing
measure capture those characteristics, illustrate if PD results in changes in perceived personality, demonstrate
the concordance between patients' and care partners' ratings of perceived personality change, and confirm if
DBS results in changes in individually meaningful personality characteristics. These data have profound
implications for the identification/development of measures that mirror patients' values; will contribute to a
novel iterative informed consent process that includes systematic assessment of patient's values, goals and
perceived personality changes; will inform philosophical and public discussions of identity and autonomy in the
context of DBS; and, most importantly, may allow clinicians to ease needless fears.

## Key facts

- **NIH application ID:** 9959467
- **Project number:** 5R01MH114853-04
- **Recipient organization:** CLEVELAND CLINIC LERNER COM-CWRU
- **Principal Investigator:** Cynthia M. S. Kubu
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $411,095
- **Award type:** 5
- **Project period:** 2017-09-13 → 2023-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9959467

## Citation

> US National Institutes of Health, RePORTER application 9959467, Ethics of Patients and Care Partners Perspectives on Personality Change in Parkinsons disease and Deep Brain Stimulation (5R01MH114853-04). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/9959467. Licensed CC0.

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