Current Perceptions and Unmet Needs of People with Parkinson Disease and their Families

Abstract

Purpose: A new diagnosis of Parkinson disease (PD) occurs every nine minutes in the United States. It is a multimodality neurogenic disorder whose prevalence is expected to only increase worldwide in the coming decades. Therefore, a systematic examination of the current perception of PD symptoms and the different unmet needs of people with PD and their families can allow healthcare professionals to design more effective education, awareness, and management programs. The current study examined perceptions of different PD-related symptoms among individuals with PD and care partners (including spouses and family members) living in different communities of the United States (including Oklahoma and surrounding regions).Methods: The study included 39 participants with PD and 11 care partners based in four states (including Arkansas, Kansas, Oklahoma, and Texas).Results: Findings indicated that participants with PD and care partners more frequently reported motor symptoms associated with PD than nonmotor and communication symptoms. In addition, specific to unmet needs, both groups reported the need for specialized services and educational resources related to PD symptoms in their respective communities.Conclusions: Overall, there is a need for more widespread education and access to specialized services specific to PD. Overall, findings from the study will help create more effective service delivery programs for individuals with PD and their families in different communities.