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Framing advance care planning in Parkinson disease: Patient and care partner perspectives.
Neurology. 2019 05 28; 92(22):e2571-e2579.Neur

Abstract

OBJECTIVE

Advance care planning (ACP) is a core quality measure in caring for individuals with Parkinson 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

This is a qualitative descriptive study of 30 patients with PD and 30 care partners within a multisite, 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 health care 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 patients with PD and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care.

Authors+Show Affiliations

From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada. Hillary.lum@ucdenver.edu.From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.

Pub Type(s)

Journal Article
Multicenter Study
Randomized Controlled Trial
Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

31028124

Citation

Lum, Hillary D., et al. "Framing Advance Care Planning in Parkinson Disease: Patient and Care Partner Perspectives." Neurology, vol. 92, no. 22, 2019, pp. e2571-e2579.
Lum HD, Jordan SR, Brungardt A, et al. Framing advance care planning in Parkinson disease: Patient and care partner perspectives. Neurology. 2019;92(22):e2571-e2579.
Lum, H. D., Jordan, S. R., Brungardt, A., Ayele, R., Katz, M., Miyasaki, J. M., Hall, A., Jones, J., & Kluger, B. (2019). Framing advance care planning in Parkinson disease: Patient and care partner perspectives. Neurology, 92(22), e2571-e2579. https://doi.org/10.1212/WNL.0000000000007552
Lum HD, et al. Framing Advance Care Planning in Parkinson Disease: Patient and Care Partner Perspectives. Neurology. 2019 05 28;92(22):e2571-e2579. PubMed PMID: 31028124.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Framing advance care planning in Parkinson disease: Patient and care partner perspectives. AU - Lum,Hillary D, AU - Jordan,Sarah R, AU - Brungardt,Adreanne, AU - Ayele,Roman, AU - Katz,Maya, AU - Miyasaki,Janis M, AU - Hall,Anne, AU - Jones,Jacqueline, AU - Kluger,Benzi, Y1 - 2019/04/26/ PY - 2018/10/04/received PY - 2019/01/25/accepted PY - 2019/4/28/pubmed PY - 2019/12/27/medline PY - 2019/4/28/entrez SP - e2571 EP - e2579 JF - Neurology JO - Neurology VL - 92 IS - 22 N2 - OBJECTIVE: Advance care planning (ACP) is a core quality measure in caring for individuals with Parkinson 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: This is a qualitative descriptive study of 30 patients with PD and 30 care partners within a multisite, 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 health care 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 patients with PD and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care. SN - 1526-632X UR - https://www.unboundmedicine.com/medline/citation/31028124/Framing_advance_care_planning_in_Parkinson_disease:_Patient_and_care_partner_perspectives_ L2 - http://www.neurology.org/cgi/pmidlookup?view=long&pmid=31028124 DB - PRIME DP - Unbound Medicine ER -