title: Palliative care and Parkinson's disease: Meeting summary and recommendations for clinical research.
abstract: Palliative care is an approach to caring for patients and families affected by serious illnesses that focuses on the relief of suffering through the management of medical symptoms, psychosocial issues, advance care planning and spiritual wellbeing. Over the past decade there has been an emerging clinical and research interest in the application of palliative care approaches to Parkinson's disease (PD) and outpatient palliative care services are now offered by several movement disorders centers.
  
  
  
  An International Working Group Meeting on PD and Palliative Care supported by the Parkinson's Disease Foundation was held in October 2015 to review the current state of the evidence and to make recommendations for clinical research and practice.
  
  
  
  Topics included: 1) Defining palliative care for PD; 2) Lessons from palliative care for heart failure and other chronic illnesses; 3) Patient and caregiver Needs; 4) Needs assessment tools; 5) Intervention strategies; 6) Predicting prognosis and hospice referrals; 7) Choice of appropriate outcome measures; 8) Implementation, dissemination and education research; and 9) Need for research collaborations. We provide an overview of these discussions, summarize current evidence and practices, highlight gaps in our knowledge and make recommendations for future research.
  
  
  
  Palliative Care for PD is a rapidly growing area which holds great promise for improving outcomes for PD patients and their caregivers. While clinical research in this area can build from lessons learned in other diseases, there is a need for observational, methodological and interventional research to address the unique needs of PD patients and caregivers.
authors.affiliation: Department of Neurology, University of Colorado School of Medicine, Anschutz Medical Campus, 12631 E 17th Ave, Mail Stop B185, Aurora, CO 80045, USA. Electronic address: benzi.kluger@ucdenver.edu.
authors.forename: Benzi M
authors.initials: BM
authors.lastname: Kluger
authors.affiliation: Centre for Gerontology and Rehabilitation, School of Medicine, University College Cork, The Bungalow, Block 13, St. Finbarr's Hospital, Douglas Road, Cork, Republic of Ireland.
authors.forename: Siobhán
authors.initials: S
authors.lastname: Fox
authors.affiliation: Centre for Gerontology and Rehabilitation, School of Medicine, University College Cork, The Bungalow, Block 13, St. Finbarr's Hospital, Douglas Road, Cork, Republic of Ireland.
authors.forename: Suzanne
authors.initials: S
authors.lastname: Timmons
authors.affiliation: Department of Neurology, University of California San Francisco, 4150 Clement St. #219G, San Francisco, CA 94143, USA.
authors.forename: Maya
authors.initials: M
authors.lastname: Katz
authors.affiliation: Department of Neurology, University of California San Francisco, 4150 Clement St. #219G, San Francisco, CA 94143, USA.
authors.forename: Nicholas B
authors.initials: NB
authors.lastname: Galifianakis
authors.affiliation: Department of Neurology, University of California Los Angeles, 300 UCLA Medical Plaza, Suite B200, Los Angeles, CA 90095, USA.
authors.forename: Indu
authors.initials: I
authors.lastname: Subramanian
authors.affiliation: Department of Neurology, Oregon Health and Science University, 3181 SW Sam Jackson Park Road, L226, Portland, OR 97239, USA.
authors.forename: Julie H
authors.initials: JH
authors.lastname: Carter
authors.affiliation: Hull York Medical School, University of Hull, Hertford Building, Hull HU6 7RX, UK.
authors.forename: Miriam J
authors.initials: MJ
authors.lastname: Johnson
authors.affiliation: Department of Elderly Medicine, Leeds Teaching Hospitals Trust, UK.
authors.forename: Edward W
authors.initials: EW
authors.lastname: Richfield
authors.affiliation: Department of Internal Medicine, University of Colorado School of Medicine, Anschutz Medical Campus, 12401 East 17th Avenue, Mail Stop B180, Aurora, CO 80045, USA; Department of Medicine, VA Eastern Colorado Health Care System, 1055 Clermont Street, Denver, CO 80220, USA.
authors.forename: David
authors.initials: D
authors.lastname: Bekelman
authors.affiliation: Department of Internal Medicine, University of Colorado School of Medicine, Anschutz Medical Campus, 12401 East 17th Avenue, Mail Stop B180, Aurora, CO 80045, USA.
authors.forename: Jean S
authors.initials: JS
authors.lastname: Kutner
authors.affiliation: Division of Neurology, University of Alberta, 13-103 Clinical Sciences Building, 11350-83 Avenue, Edmonton, Alberta T6G 2R3, Canada.
authors.forename: Janis
authors.initials: J
authors.lastname: Miyasaki
mesh_terms: D035843:Biomedical Research / Q000379:methods / Q000592:standards / Q000706:statistics & numerical data; D006801:Humans; D010166:Palliative Care / Q000379:methods*; D010300:Parkinson Disease / Q000175:diagnosis / Q000451:nursing*
keywords: Clinical research; Palliative care; Parkinson's disease