Isabel Boersma1, Jacqueline Jones1, Julie Carter1, David Bekelman1, Janis Miyasaki1, Jean Kutner1, Benzi Kluger1. 1. Departments of Neurology (IB, BK) and Internal Medicine (DB, JK) and the College of Nursing (JJ), University of Colorado Anschutz Medical Campus, Aurora; the Oregon Health Sciences University Parkinson's Center (JC), Portland; and the Division of Neurology (JM), University of Alberta, Edmonton, Canada.
Abstract
BACKGROUND: A growing body of literature suggests that patients with Parkinson disease (PD) have many unmet needs under current models of care that may be addressed through palliative care approaches. A first step in improving care for patients with PD through palliative care principles is to better understand patient perspectives on their perceived needs and care preferences. METHODS: A total of 30 in-depth individual interviews and 4 focus groups were held to elicit the perspectives of patients with PD on unmet palliative care needs and preferences for addressing these needs. We used ATLAS.ti and inductive qualitative data analysis techniques to interpret responses. RESULTS: Patients articulated major challenges in living with a diverse and complex set of motor and nonmotor symptoms; feelings of loss; changes in roles, relationships, and concept of self; and expressed concerns about the future. Participants discussed gaps in their care, including support at the time of diagnosis, education about the disease, and advance care planning. There was an expressed interest in and openness of participants to interdisciplinary approaches for addressing these needs. CONCLUSIONS: PD has a profound effect on multiple domains of a person's life starting at diagnosis. Patients desired individualized care and identified several areas where care from their primary neurologist could be improved. Patients were receptive to outpatient team-based palliative care services to address psychosocial issues, adjustment to illness (particularly at diagnosis and with progression), nonmotor symptom control, and advance care planning as an adjunct to usual care. Future research is needed to develop and test the effectiveness of palliative approaches to improve the care of patients with PD.
BACKGROUND: A growing body of literature suggests that patients with Parkinson disease (PD) have many unmet needs under current models of care that may be addressed through palliative care approaches. A first step in improving care for patients with PD through palliative care principles is to better understand patient perspectives on their perceived needs and care preferences. METHODS: A total of 30 in-depth individual interviews and 4 focus groups were held to elicit the perspectives of patients with PD on unmet palliative care needs and preferences for addressing these needs. We used ATLAS.ti and inductive qualitative data analysis techniques to interpret responses. RESULTS:Patients articulated major challenges in living with a diverse and complex set of motor and nonmotor symptoms; feelings of loss; changes in roles, relationships, and concept of self; and expressed concerns about the future. Participants discussed gaps in their care, including support at the time of diagnosis, education about the disease, and advance care planning. There was an expressed interest in and openness of participants to interdisciplinary approaches for addressing these needs. CONCLUSIONS:PD has a profound effect on multiple domains of a person's life starting at diagnosis. Patients desired individualized care and identified several areas where care from their primary neurologist could be improved. Patients were receptive to outpatient team-based palliative care services to address psychosocial issues, adjustment to illness (particularly at diagnosis and with progression), nonmotor symptom control, and advance care planning as an adjunct to usual care. Future research is needed to develop and test the effectiveness of palliative approaches to improve the care of patients with PD.
Authors: Martijn van der Eijk; Marjan J Faber; Sara Al Shamma; Marten Munneke; Bastiaan R Bloem Journal: Parkinsonism Relat Disord Date: 2011-03-10 Impact factor: 4.891
Authors: Hillary D Lum; Sarah R Jordan; Adreanne Brungardt; Roman Ayele; Maya Katz; Janis M Miyasaki; Anne Hall; Jacqueline Jones; Benzi Kluger Journal: Neurology Date: 2019-04-26 Impact factor: 9.910
Authors: Jori Fleisher; William Barbosa; Meghan M Sweeney; Sarah E Oyler; Amy C Lemen; Arash Fazl; Mia Ko; Talia Meisel; Naomi Friede; Geraldine Dacpano; Rebecca M Gilbert; Alessandro Di Rocco; Joshua Chodosh Journal: J Am Geriatr Soc Date: 2018-04-02 Impact factor: 5.562
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