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Integrating Patient Concerns into Parkinson’s Disease Management

  • Movement Disorders (SH Fox, Section Editor)
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Abstract

Parkinson’s disease (PD) is a complex motor and non-motor disorder and management is often challenging. In this review, we explore emerging approaches to improve the care of patients, drawing from the literature regarding patient-centred care, patient and caregiver perspectives and priorities, gaps in knowledge among patients and caregivers and the need for accurate information, individual variability in disease manifestations, prognostication of disease course, new developments in health technologies and personalized medicine, specialty care, pharmacological and non-pharmacological management, financial burden, lifestyle and work-related issues, support groups and palliative care.

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Acknowledgements

We are grateful to all our patients and their caregivers who have taught us so much. We wish to acknowledge the insightful feedback received from Ms. Sara Lew Lai Heong (President, Malaysian PD Association and previously a caregiver for many years), Mr. Samuel Ng Hoong Fong (President, Perak Parkinson’s Association, MJFF Fox Trial Finder Ambassador, and himself having PD since 2009), Ms. Cheryl Vanderschaaf (Volunteer, Malaysian PD Association and previously a caregiver), Mr. Chung Han Yang (Resource & Research Administrator, Parkinson’s & Movement Disorders Service, University of Malaya, and previously a caregiver), and Dr. Narelle Warren PhD (Medical Sociologist with an interest in chronic illness). SY Lim and AH Tan received funding support from the Malaysian Ministry of Higher Education grant for High-Impact Research (HIR) UM.C/625/1/HIR/MOHE/CHAN/11/03.

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Authors and Affiliations

  1. Division of Neurology, University of Malaya, Kuala Lumpur, Malaysia

    Shen-Yang Lim, Ai Huey Tan & Soon Chai Low

  2. Mah Pooi Soo & Tan Chin Nam Centre for Parkinson’s & Related Disorders, University of Malaya, Kuala Lumpur, Malaysia

    Shen-Yang Lim & Ai Huey Tan

  3. Movement Disorder Clinic, University of Toronto, Toronto Western Hospital, Toronto, ON, Canada

    Susan H. Fox

  4. Department of Neurology, Royal Melbourne Hospital, Parkville, VIC, Australia

    Andrew H. Evans

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  1. Shen-Yang Lim
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Correspondence to Shen-Yang Lim.

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Conflict of Interest

Soon Chai Low declares no conflict of interest.

Shen-Yang Lim reports grants from the Malaysian Ministry of Higher Education, grant for High-Impact Research (HIR) UM.C/625/1/HIR/MOHE/CHAN/11/03, during the conduct of the study and personal fees from Medtronic, UCB, International Parkinson’s & Movement Disorder Society (MDS), Novartis, Davis Phinney Foundation for Parkinson’s, and Ipsen, outside the submitted work.

Ai Huey Tan reports grants from the Malaysian Ministry of Higher Education, grant for High-Impact Research (HIR) UM.C/625/1/HIR/MOHE/CHAN/11/03, during the conduct of the study, and grants from International Parkinson’s & Movement Disorder Society (MDS), outside the submitted work.

Susan H. Fox has received consultancy fees from Prexton and Lundbeck; grants from Acadia, Kyowa, Avanir, Cynapsus, Biotie, NIH, Parkinson Society Canada, and MJFF; and honoraria payments and paid travel expenses from AAN, IPMDS, and WPC.

Andrew H. Evans has received honoraria from Novartis, Abbvie, GKC, Teva and UCB for giving presentation. Honoraria from CSL for providing consultancy services. He has received travel grants from Abbvie. He has participation in scientific advisory board meetings for UCB pharma, Allergan, GKC, Stada and Abbvie. He holds shares in CSL and GKC.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

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This article is part of the Topical Collection on Movement Disorders

A special thank you to Dr. Stanley Fahn for taking the time to review this manuscript.

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Lim, SY., Tan, A.H., Fox, S.H. et al. Integrating Patient Concerns into Parkinson’s Disease Management. Curr Neurol Neurosci Rep 17, 3 (2017). https://doi.org/10.1007/s11910-017-0717-2

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