Janis M Miyasaki1, Shen-Yang Lim2, K Ray Chaudhuri3, Angelo Antonini4, Maria Piemonte5, Edward Richfield6, Daniela Alburquerque Gonzalez7, Stefan Lorenzl8,9,10, Richard Walker11, Roongroj Bhidayasiri12,13, Raquel Bouca14, Victor McConvey15. 1. Parkinson and Movement Disorders Program, Department of Medicine, Division of Neurology, University of Alberta, Edmonton, Alberta, Canada. 2. Division of Neurology, Department of Medicine, and the Mah Pooi Soo & Tan Chin Nam Centre for Parkinson's & Related Disorders, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia. 3. Parkinson Foundation International Centre of Excellence, Kings College Hospital and Kings College, Denmark Hill Campus, London, United Kingdom. 4. Movement Disorders Unit-Center for Rare Neurological Diseases, Department of Neuroscience, University of Padua, Padua, Italy. 5. Physical Therapy, Speech Therapy, and Occupational Therapy Department, Medical School, University of Sao Paulo, Sao Paulo, Brazil. 6. North Bristol NHS Trust, Bristol, United Kingdom. 7. Centro de Trastornos del Movimiento, Facultad de Ciencias Médicas, Universidad de Santiago de Chile, Santiago, Chile. 8. Institute of Nursing Science and Practice, Paracelsus Medical University, Salzburg, Austria. 9. Ludwig-Maximillians-University, Munich, Germany. 10. Department of Neurology, Kliniku Agatharied, Hausham, Germany. 11. Northumbria Healthcare NHS Foundation Trust, Newcastle Upon Tyne, United Kingdom. 12. Chulalongkorn Centre of Excellence for Parkinson's Disease and Related Disorders, Department of Medicine, Faculty of Medicine, Chulalongkorn University and King Chulalongkorn Memorial Hospital, Thai Red Cross Society, Bangkok, Thailand. 13. The Academy of Science, The Royal Society of Thailand, Bangkok, Thailand. 14. Instituto de Medicina Molecular Joao Lobo Antunes, Lisbon, Portugal. 15. Parkinson Victoria, Surrey Hills, Victoria, Australia.
Abstract
BACKGROUND: Neuropalliative care is an emerging field for those with neurodegenerative illnesses, but access to neuropalliative care remains limited. OBJECTIVE: We sought to determine Movement Disorder Society (MDS) members' attitudes and access to palliative care. METHODS: A quantitative and qualitative survey instrument was developed by the MDS Palliative Care Task Force and e-mailed to all members for completion. Descriptive statistics and qualitative analysis were triangulated. RESULTS: Of 6442 members contacted, 652 completed the survey. Completed surveys indicating country of the respondent overwhelmingly represented middle- and high-income countries. Government-funded homecare was available to 54% of respondents based on patient need, 25% limited access, and 21% during hospitalization or an acute defined event. Eighty-nine percent worked in multidisciplinary teams. The majority endorsed trigger-based referrals to palliative care (75.5%), while 24.5% indicated any time after diagnosis was appropriate. Although 66% referred patients to palliative care, 34% did not refer patients. Barriers were identified by 68% of respondents, the most significant being available workforce, financial support for palliative care, and perceived knowledge of palliative care physicians specific to movement disorders. Of 499 respondents indicating their training in palliative care or desire to learn these skills, 55% indicated a desire to gain more skills. CONCLUSIONS: The majority of MDS member respondents endorsed a role for palliative care in movement disorders. Many members have palliative training or collaborate with palliative care physicians. Although significant barriers exist to access palliative care, the desire to gain more skills and education on palliative care is an opportunity for professional development within the MDS.
BACKGROUND: Neuropalliative care is an emerging field for those with neurodegenerative illnesses, but access to neuropalliative care remains limited. OBJECTIVE: We sought to determine Movement Disorder Society (MDS) members' attitudes and access to palliative care. METHODS: A quantitative and qualitative survey instrument was developed by the MDS Palliative Care Task Force and e-mailed to all members for completion. Descriptive statistics and qualitative analysis were triangulated. RESULTS: Of 6442 members contacted, 652 completed the survey. Completed surveys indicating country of the respondent overwhelmingly represented middle- and high-income countries. Government-funded homecare was available to 54% of respondents based on patient need, 25% limited access, and 21% during hospitalization or an acute defined event. Eighty-nine percent worked in multidisciplinary teams. The majority endorsed trigger-based referrals to palliative care (75.5%), while 24.5% indicated any time after diagnosis was appropriate. Although 66% referred patients to palliative care, 34% did not refer patients. Barriers were identified by 68% of respondents, the most significant being available workforce, financial support for palliative care, and perceived knowledge of palliative care physicians specific to movement disorders. Of 499 respondents indicating their training in palliative care or desire to learn these skills, 55% indicated a desire to gain more skills. CONCLUSIONS: The majority of MDS member respondents endorsed a role for palliative care in movement disorders. Many members have palliative training or collaborate with palliative care physicians. Although significant barriers exist to access palliative care, the desire to gain more skills and education on palliative care is an opportunity for professional development within the MDS.