Objective: To identify which ethical requirements are placed by people with Parkinson’s disease (PwPDs) and their care partners on person-centered care.

Background: To improve the symptoms and to maintain the quality of life (QoL) of PwPD and their care partners, comprehensive care approaches are needed. Person-centered care prioritizes the needs, preferences, and values of patients, and is increasingly recognized as an essential component of PwPDs care [1]. So far there has been no cross-national analysis of the ethical considerations that are crucial to implementing this approach in PD care.

Method: This study, as part of the iCare-PD study, aims to identify the ethical considerations in person-centered PD care by comparing PwPDs wishes and concerns across 6 countries. A cross-national survey was conducted with 112 PwPDs and care partners in Czech Republic (n= 18), Ireland (n=17), Germany (n= 20), France (n= 21), Spain (n=16) and Canada (n= 19). The survey included questions about PwPDs’ preferences for care, concerns about the disease and the future. Based on a qualitative content analysis of this material, core ethical principles were derived inductively.

Results: PwPDs and care partners’ wishes and concerns regarding PD care are largely consistent with only a few differences across countries. We identified care priorities across all countries and assigned these to key ethical principles (e.g., autonomy). Also, we indicate which stakeholders in PD care are addressed by these concepts. All PwPDs highlighted the importance of person-centered care and the need for healthcare providers to respect PwPDs’ and care partners’ autonomy and involvement in decision-making.

Conclusion: Implementing person-centered care in PD requires a thoughtful and nuanced approach that takes multilevel ethical considerations into account. By prioritizing the wishes and concerns of PwPDs while addressing the unique complexities of living with PD, healthcare providers can help improve QoL. The orientation towards ethical core principles, which are based on the needs of the PwPDs, is essential.

References: [1]BHIDAYASIRI, Roongroj, et al. Delivering patient-centered care in Parkinson’s disease: challenges and consensus from an international panel. Parkinsonism & related disorders, 2020, 72. Jg., S. 82-87.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/ethical-considerations-in-person-centered-parkinsons-disease-care-a-cross-national-comparison-of-patients-perspectives/