Development and Acceptability Testing of a Patient Decision Aid on Levodopa Intestinal Gel for Parkinson Disease.

BACKGROUND

Parkinson's disease (PD) is a neurodegenerative disease characterized by motor and nonmotor symptoms that worsen over time. In some cases, an advanced treatment may be needed. The use of levodopa-carbidopa intestinal gel (LCIG) is one of these options. However, deciding whether to receive it can be difficult. A patient decision aid (PDA), a tool designed to inform about treatment options, can help and promote patients' participation in decision making.

OBJECTIVES

This study was conducted to develop a PDA on LCIG and assess its acceptability.

METHODS

The International Patient Decision Aid Standards framework was used to develop the PDA. An advisory committee (n = 5) gave feedback on the PDA prototype. Acceptability was evaluated using a cross-sectional descriptive design. A convenience sample of 36 participants (including persons with PD receiving and not receiving LCIG, caregivers, and health care professionals) was used. Acceptability data, sociodemographics, and health literacy were collected using questionnaires and a focus group.

RESULTS

Sample characteristics were a mean age of 64.4 y (s = 14 y), university level of education (46.7%), and duration of illness of less than 10 y (80%). The health literacy score was judged as very good ( x ¯ = 55.2/70, s = 7.3). Qualitative data analysis allowed for final adjustments to the published PDA version. Conclusions. This study is the first to report the development of a PDA on LCIG and its acceptability testing. Participants found the PDA to be useful and would recommend it. All health care professionals indicated they intended to use it in their practice. More research will be needed to evaluate the PDA's implementation and its effects on users.

HIGHLIGHTS: Deciding whether to opt for an advanced Parkinson's disease treatment such as levodopa-carbidopa intestinal gel can be challenging for many patients.A patient decision aid on levodopa-carbidopa intestinal gel for Parkinson's disease persons, caregivers, and health care professionals was developed to support a decision-making process.This article summarizes the steps used for its development and its acceptability testing.