Patient Perceptions of Troublesome Levodopa-Induced Dyskinesia: Exploring Measures of the Impact of Dyskinesia
Author(s)
Geof Gray, Business Communications1, Dana Michelle Saavedra Roman, MPH2, Jeungbin Yim, MPH3, Hannah Thomson, Neuropsychology4, Esther Labib-Kiyarash, MSHA5, David Subich, MD6, Susan Honn, MA7, Evelyn Stevens, B.A., MPH5, Casey Gallagher, B.A.5.
1Insights and Evidence Generation, Syneos Health, Bridgewater, NJ, USA, 2Insights and Evidence Generation, Syneos Health, San Diego, NJ, USA, 3Insights and Evidence Generation, Syneos Health, Morrisville, NJ, USA, 4Neuroscience of Addiction and Mental Health Program, Healthy Brain and Mind Research Centre, School, Australian Catholic University, Fitzroy, Australia, 5Parkinson's Foundation, Miami, FL, USA, 6Medical and Scientific Management, Syneos Health, Morrisville, NC, USA, 7Neuroscience Therapeutic Strategy and Innovation, Syneos Health, Morrisville, NC, USA.
1Insights and Evidence Generation, Syneos Health, Bridgewater, NJ, USA, 2Insights and Evidence Generation, Syneos Health, San Diego, NJ, USA, 3Insights and Evidence Generation, Syneos Health, Morrisville, NJ, USA, 4Neuroscience of Addiction and Mental Health Program, Healthy Brain and Mind Research Centre, School, Australian Catholic University, Fitzroy, Australia, 5Parkinson's Foundation, Miami, FL, USA, 6Medical and Scientific Management, Syneos Health, Morrisville, NC, USA, 7Neuroscience Therapeutic Strategy and Innovation, Syneos Health, Morrisville, NC, USA.
OBJECTIVES: “Troublesome” is used to describe levodopa-induced dyskinesia (LID) that interferes with activities of daily living (ADLs) and reduces quality of life (QoL) for people with Parkinson’s Disease (PD). Clinical trial screening for troublesome LID identified differences between patient and Health Care Professional (HCP) perception of “troublesome”. The lack of dyskinesia conceptual models in literature, further highlights the need for a patient-informed tool to understand patient LID experience.To understand the patient perception and experience of troublesome LID, to inform a meaningful definition and explore the feasibility of developing a PRO with high face value to evaluate LID.
METHODS: Ten individuals with PD (n=5 US, n=5 UK) were recruited via a patient organization and social media campaign. Eligibility matched the inclusion criteria of a planned Phase III clinical trial for LID treatment, [PD diagnosis, age ≥ 21, levodopa usage (≥4 doses/day), and LID]. Semi-structured interviews conducted using a discussion guide informed by a narrative literature review explored LID symptoms, daily impacts, and perceptions of troublesome LID. Transcripts were analyzed using NVivo with a two-phase coding approach to identify key concepts. Themes were cross matched against the instruments recommended by the International Parkinsons and Movement Disorder Society for LID evaluation.
RESULTS: A conceptual model was created to describe dyskinesia and its impact on health-related QoL. The definition of troublesome lacked meaning for patients and was not aligned with their experience of LID. Existing measures of LID do not capture the range of strategies patients use to manage ADLs (manipulating dose timing, ADL adjustment, social avoidance). Hypothetical ADL scenario based measures do not capture patient LID experiences, highlighting the need for a patient centered PRO instrument.
CONCLUSIONS: Participants provide more meaningful descriptions of troublesome LID. The results support the development of a PRO to assess the patient perception of troublesome LID.
METHODS: Ten individuals with PD (n=5 US, n=5 UK) were recruited via a patient organization and social media campaign. Eligibility matched the inclusion criteria of a planned Phase III clinical trial for LID treatment, [PD diagnosis, age ≥ 21, levodopa usage (≥4 doses/day), and LID]. Semi-structured interviews conducted using a discussion guide informed by a narrative literature review explored LID symptoms, daily impacts, and perceptions of troublesome LID. Transcripts were analyzed using NVivo with a two-phase coding approach to identify key concepts. Themes were cross matched against the instruments recommended by the International Parkinsons and Movement Disorder Society for LID evaluation.
RESULTS: A conceptual model was created to describe dyskinesia and its impact on health-related QoL. The definition of troublesome lacked meaning for patients and was not aligned with their experience of LID. Existing measures of LID do not capture the range of strategies patients use to manage ADLs (manipulating dose timing, ADL adjustment, social avoidance). Hypothetical ADL scenario based measures do not capture patient LID experiences, highlighting the need for a patient centered PRO instrument.
CONCLUSIONS: Participants provide more meaningful descriptions of troublesome LID. The results support the development of a PRO to assess the patient perception of troublesome LID.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
MSR163
Topic
Methodological & Statistical Research, Patient-Centered Research, Real World Data & Information Systems
Topic Subcategory
PRO & Related Methods
Disease
Neurological Disorders