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Parkinson Matters: A Call to Action to Improve Patient Care

Experts propose ways to address the rapidly rising number of deaths from Parkinson’s disease and related disorders and improve the end of life care of Parkinson patients in JPD

September 10, 2018
Amsterdam, NL – Deaths associated with Parkinson’s disease and related disorders increased substantially between 2001 and 2014. Parkinson’s disease was in fact the most common cause of death associated with a neurological condition, according to a report by Public Health England. International experts reporting in the Journal of Parkinson’s Disease evaluate these findings and address important implications for future healthcare needs.

The burden caused by Parkinson’s disease has increased alarmingly in recent years, taking the proportions of a true Parkinson “pandemic.” Over six and a half million individuals aged 20 years and over died in England between 2001 and 2014 according to the recent report by Public Health England. Of these, over 90,000 deaths were associated with a neurological condition. Parkinson’s disease was the most common individual neurological condition recorded on the death certificates as the underlying cause of death. Parkinson’s disease was the most common cause of death overall and accounted for 31% of deaths associated with a neurological condition as the underlying cause, the contributory cause, or both.

Reviewing the report, a team of international experts led by Professor Bastiaan R. Bloem, MD, PhD; Radboud University Medical Center, Nijmegen, The Netherlands explore the deeper relevance of the numbers and trends. “These statistics are important and should be used to inform and guide those who make long-term decisions about the practicalities of how Parkinson patients are managed by the various healthcare systems involved, working together to improve quality of care and quality of life,” comments Prof. Bloem.

“There are several possible explanations for the increase in mortality associated with Parkinson’s disease. It is certainly in keeping with other recent reports that point to a striking rise in the incidence of new patients with Parkinson’s disease in the general population.”

The authors also highlight compelling data on the place of death, revealing that eight out of ten Parkinson patients die in hospitals or care homes. First author Sirwan Darweesh, MD, MSc, Radboud University Medical Center, Nijmegen, The Netherlands, and Harvard T.H. Chan School of Public Health, Boston, MA, USA, emphasizes the tremendous importance of this finding: “Being able to die at home is a core wish of most patients with Parkinson’s disease; our current healthcare system is sometimes not able unable to meet this essential wish of patients and their families, particularly when medical issues requiring hospitalization occur.”

The authors propose a number of solutions to improve the management of Parkinson patients in the community and raise standards of care in care homes and hospitals:

• A network of specifically trained healthcare professionals with specific expertise in Parkinson management
• A personalized, collaborative plan of care, not only for, but also with patients and their families
• Personal case managers for Parkinson patients
• Dedicated Parkinson nursing homes

“Parkinson’s disease is a matter of serious concern for our future generations,” comments Prof. Bloem. “Future efforts should be focused on providing resources for vulnerable elderly Parkinson patients, avoiding unplanned hospital admissions and out-of-home deaths as much as possible.”

The Public Health England report is “Deaths associated with neurological conditions in England 2001 to 2014” (PDF), issued by the National Neurology Intelligence Network, National End of Life Care Intelligence Network. It investigates the numbers and rates of deaths associated with neurological conditions and their recent trends; the demographic characteristics of people dying with neurological conditions; the underlying cause of death and association with the broad disease groups; and place of death.

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NOTES FOR EDITORS
Full open access study: “Parkinson Matters,” by Sirwan K.L. Darweesh, MD, MSc, Karen G. Raphael, PhD, Patrik Brundin, MD, PhD, Helen Matthews, Richard K. Wyse, MD, Honglei Chen, MD, PhD, and Bastiaan R. Bloem, MD, PhD (DOI 10.3233/JPD-181374), published in the Journal of Parkinson’s Disease, Volume 8, Issue 4 (October 2018) by IOS Press and available open access at:  content.iospress.com/articles/journal-of-parkinsons-disease/jpd181374.

Prof. Bas Bloem was supported by a research grant from the Parkinson Foundation.

Contact
Full text of this article is available to credentialed journalists upon request; contact Diana Murray, IOS Press (+1 718 640-5678; d.murray@iospress.com). Journalists who wish to interview the authors should contact Prof. Bas Bloem (Bas.Bloem@radboudumc.nl) or Roos de Gouw at (Roos.deGouw@radboudumc.nl).

About the Journal of Parkinson’s Disease
Launched in 2011, the Journal of Parkinson’s Disease (JPD) is dedicated to providing an open forum for original research in basic science, translational research and clinical medicine that will expedite our fundamental understanding and improve treatment of Parkinson’s disease. The journal is international and multidisciplinary and aims to promote progress in the epidemiology, etiology, genetics, molecular correlates, pathogenesis, pharmacology, psychology, diagnosis and treatment of Parkinson’s disease. JPD publishes research reports, reviews, short communications, and letters-to-the-editor and offers very rapid publication and an affordable open access option. journalofparkinsonsdisease.com

About IOS Press
IOS Press is headquartered in Amsterdam with satellite offices in the USA, Germany, India and China and serves the information needs of scientific and medical communities worldwide. IOS Press now publishes over 100 international journals and about 75 book titles each year on subjects ranging from computer sciences and mathematics to medicine and the natural sciences. iospress.com