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Data from: Framing advance care planning in Parkinson disease: patient and care partner perspectives


Lum, Hillary D. et al. (2019), Data from: Framing advance care planning in Parkinson disease: patient and care partner perspectives, Dryad, Dataset,


Objective: Advance care planning (ACP) is a core quality measure in caring for individuals with Parkinson’s disease (PD) and there are no best practice standards for how to incorporate ACP into PD care. This study describes patient and care partner perspectives on ACP to inform a patient and care partner-centered framework for clinical care. Methods: Qualitative descriptive study of 30 patients and 30 care partners affected by PD within a multi-site, randomized clinical trial of neuropalliative care compared to standard care. Participants were individually interviewed about perspectives on ACP, including prior and current experiences, barriers to ACP, and suggestions for integration into care. Interviews were analyzed using theme analysis to identify key themes. Results: Four themes illustrate how patients and care partners perceive ACP as part of clinical care: 1) personal definitions of ACP vary in the context of PD; 2) patient, relationship, and healthcare system barriers exist to engaging in ACP; 3) care partners play an active role in ACP; 4) a palliative care approach positively influences ACP. Taken together, the themes support clinician initiation of ACP discussions and interdisciplinary approaches to help patients and care partners overcome barriers to ACP. Conclusions: ACP in PD may be influenced by patient and care partner perceptions and misperceptions, symptoms of PD (e.g. apathy, cognitive dysfunction, disease severity), and models of clinical care. Optimal engagement of PD patients and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care.

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