The experience of off periods: Qualitative analysis of interviews with persons with Parkinson's and carepartners

INTRODUCTION: Off period research in Parkinson's disease commonly relies on questionnaires. We aimed to investigate the breadth of off period experiences by interviewing persons with Parkinson's disease (PwP) and carepartners. METHODS: Investigators performed PwP and carepartner dyad interviews using a semi-structured questionnaire to describe off period experiences. Investigators analyzed interview transcripts using a qualitative descriptive approach to identify and compare themes between groups. RESULTS: Twenty PwP and their carepartners participated in interviews. PwP were on average 65.1 years-old (SD 8.3) and 7.8 years (SD 4.7) after their Parkinson's disease diagnosis. PwP and carepartners identified 13 motor symptoms, 5 of which (immobility, gait changes, freezing, trouble swallowing, and having to concentrate on movements) were not in the wearing off questionnaires recommended by the International Parkinson and Movement Disorders Society. PwP and carepartners identified 15 non-motor symptoms, 8 of which (behavior changes, irritability, fatigue, language difficulties, dizziness, dry mouth, urinary symptoms, and swollen feet) were not in recommended questionnaires. Certain symptoms were reported only by PwP (e.g. dizziness, urinary symptoms) or carepartners (e.g. behavioral changes), or were reported by dyad members to different degrees (e.g. fatigue, anxiety). CONCLUSION: Wearing off questionnaires capture the presence of fluctuations and can facilitate patient-physician communication regarding off periods. However, they may miss the breadth of individual PwP experiences. PwP and carepartners also report different PwP experiences during off periods. To fully appreciate an individual's off experiences, clinicians likely need to use multiple approaches to gathering information including questionnaires and both PwP and carepartner report.