'Without the Data You're Not Going to Know If It's Important or Not': A Mixed Methods Study on What Dysphagia Intervention Outcomes are Important to People with Parkinson's Disease and Family Members.

Abstract

The lack of patient and public involvement in oropharyngeal dysphagia (OD) intervention studies in Parkinson's disease (PD) can bias the choice of outcomes to be measured in these studies. This study aimed to obtain perspectives of individuals living with OD in PD and family members/caregivers on OD intervention outcomes that are important to them. This is part of a larger Core Outcome Set project. A mixed methods study with an international online cross-sectional survey and subsequent focus groups involving people with OD in PD and family members/caregivers was conducted. Survey results were analyzed using descriptive and inferential statistics. Intervention outcomes rated most important, significantly different, inconclusive, or identified as missing in the survey were clarified in follow-up focus groups with seven previous survey participants. Focus group data were audio recorded, transcribed verbatim and analyzed following inductive and deductive content analysis using NVivo. Twelve outcomes were rated as important by ≥ 80% of the 62 survey participants. The most important outcomes were penetration/aspiration and laryngeal sensation. Fear of choking was added as an important but missing intervention outcome. In the focus groups, findings from the survey were validated. Four content categories with eleven sub-categories were identified. OD intervention outcome priorities by people with OD in PD and family members/caregivers show only partial agreement with outcomes measured in published intervention studies on OD in PD. This highlights the importance of stakeholder involvement in the design and implementation of these studies to make findings relevant to all.