title: Parkinson disease patients' perspectives on palliative care needs: What are they telling us?
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.
authors.affiliation: 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.
authors.forename: Isabel
authors.initials: I
authors.lastname: Boersma
authors.affiliation: 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.
authors.forename: Jacqueline
authors.initials: J
authors.lastname: Jones
authors.affiliation: 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.
authors.forename: Julie
authors.initials: J
authors.lastname: Carter
authors.affiliation: 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.
authors.forename: David
authors.initials: D
authors.lastname: Bekelman
authors.affiliation: 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.
authors.forename: Janis
authors.initials: J
authors.lastname: Miyasaki
authors.affiliation: 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.
authors.forename: Jean
authors.initials: J
authors.lastname: Kutner
authors.affiliation: 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.
authors.forename: Benzi
authors.initials: B
authors.lastname: Kluger