Health Literacy in Parkinson Disease: A Scoping Review.

BACKGROUND

Parkinson disease (PD) is the second most prevalent neurodegenerative condition and has a profound impact on patients' quality of life. Effective management requires active self-care, in which health literacy (HL) plays a critical role by enabling patients to acquire, interpret, and apply knowledge about their condition. This review aimed to map the existing literature on HL in PD and assess its impact on disease management.

METHODS

A scoping review was conducted in accordance with Joanna Briggs Institute guidelines and reported following Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for Scoping Review. Relevant studies were identified through systematic searches of 7 major databases. Eligibility criteria were structured using the Population-Concept-Context framework.

RESULTS

Sixteen studies were included, most published between 2016 and 2024 and predominantly from high-income countries. The studies investigated key HL dimensions, including knowledge of motor and nonmotor symptoms, medication management, and patient-provider communication. Findings revealed substantial gaps in functional HL, particularly in recognizing nonmotor symptoms and understanding pharmacological regimens, while interactive and critical HL were rarely assessed. Across studies, age, education level, and disease duration consistently influenced HL levels. Importantly, no standardized or personalized HL interventions for PD were identified.

CONCLUSIONS

HL in PD remains underdeveloped, with current research largely focused on functional HL and limited exploration of interactive or critical domains. Integrating HL assessment into routine care and developing nursing-led, personalized interventions may improve self-care, treatment adherence, and long-term outcomes for people with PD. Future research should prioritize validated measurement tools, multimodal interventions, and studies in diverse populations to address existing gaps.