Hillary D Lum1, Sarah R Jordan2, Adreanne Brungardt2, Roman Ayele2, Maya Katz2, Janis M Miyasaki2, Anne Hall2, Jacqueline Jones2, Benzi Kluger2. 1. 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. 2. 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.
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.
RCT Entities:
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: Rebecca L Sudore; Hillary D Lum; John J You; Laura C Hanson; Diane E Meier; Steven Z Pantilat; Daniel D Matlock; Judith A C Rietjens; Ida J Korfage; Christine S Ritchie; Jean S Kutner; Joan M Teno; Judy Thomas; Ryan D McMahan; Daren K Heyland Journal: J Pain Symptom Manage Date: 2017-01-03 Impact factor: 3.612
Authors: Carmen H M Houben; Martijn A Spruit; Miriam T J Groenen; Emiel F M Wouters; Daisy J A Janssen Journal: J Am Med Dir Assoc Date: 2014-03-02 Impact factor: 4.669
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Authors: Sarah R Jordan; Benzi Kluger; Roman Ayele; Adreanne Brungardt; Anne Hall; Jacqueline Jones; Maya Katz; Janis M Miyasaki; Hillary D Lum Journal: Ann Palliat Med Date: 2020-02-06
Authors: Herma Lennaerts-Kats; Jenny T van der Steen; Zefanja Vijftigschild; Maxime Steppe; Marjan J Meinders; Marten Munneke; Bastiaan R Bloem; Kris C P Vissers; Marieke M Groot Journal: PLoS One Date: 2020-04-21 Impact factor: 3.240
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Authors: Benzi M Kluger; Cornelia Drees; Thomas R Wodushek; Lauren Frey; Laura Strom; Mesha-Gay Brown; Jacquelyn L Bainbridge; Sarah N Fischer; Archana Shrestha; Mark Spitz Journal: Epilepsy Behav Date: 2020-11-24 Impact factor: 3.337
Authors: Leonard L Sokol; Michael J Young; Jack Paparian; Benzi M Kluger; Hillary D Lum; Jessica Besbris; Neha M Kramer; Anthony E Lang; Alberto J Espay; Ornella M Dubaz; Janis M Miyasaki; Daniel D Matlock; Tanya Simuni; Moran Cerf Journal: NPJ Parkinsons Dis Date: 2019-11-22