Objective: To develop a patient decision aid on levodopa/carbidopa intestinal gel (LCIG) and to test its acceptability.

Background: : Advanced Parkinson’s disease (PD) is characterized by motor and non-motor fluctuations, which can be hard to control with oral medication. Advanced treatments, including LCIG, can then be offered. Deciding whether to opt for this treatment can be difficult. Despite the availability of information tools, none allows potential users to balance the risks and benefits of this option and evaluate their preferences. In order to promote shared decision-making (SDM), a patient decision aid (PDA) for LCIG was developed, highlighting technical aspects of the treatment and the most relevant research data.

Method: The PDA development process proposed by “The International Patient Decision Aid Standards” [1, 2] and the design steps suggested in “Designing Shared Decision Aid Tools” by Université Laval [3] served as a guide. In addition, an advisory committee composed of individuals from the study populations provided input throughout the PDA development process. For a PDA to be considered valid and the decision-making process it guides to be of high quality, it must be evaluated using an evidence-based approach, including documentation of its acceptability. A cross-sectional descriptive design was used. Acceptability data were collected by means of self-administered questionnaires (acceptability, sociodemographic, and literacy) and semi-structured group interviews with people with PD, their caregivers and health professionals. Participants were recruited through the PD’s local association in Sherbrooke, Canada.

Results: 35 participants were included in the study. Qualitative analysis allowed us to identify the elements of the tool that were appreciated, those that were less and suggestions for improvement. Participants found the PDA useful and would recommend it. All health professionals surveyed indicated that they intend to use it in their practice.

Conclusion: The PDA was well received. Documenting feedback allowed for adjustments and corrections to the PDA which is now available to support SDM with patients and their caregivers.

References: 1 Coulter, A., Stilwell, D., Kryworuchko, J., Mullen, P. D., Ng, C. J., & van der Weijden, T. (2013). A systematic development process for patient decision aids. BMC Medical Informatics and Decision Making, 13(S2), S2. https://doi.org/10.1186/1472-6947-13-S2-S2
2 Elwyn, G. (2006). Developing a quality criteria framework for patient decision aids : Online international Delphi consensus process. BMJ, 333(7565), 417‑0. https://doi.org/10.1136/bmj.38926.629329.AE
3 Université Laval. (2019). Conception d’outils d’aide à la prise de décision partagée. https://www.boitedecision.ulaval.ca/formations/conception-outils/

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MDS Abstracts - https://www.mdsabstracts.org/abstract/developement-and-acceptability-testing-of-a-patient-decision-aid-on-levodopa-carbidopa-intestinal-gel/