Category: Other
Objective: Understanding patients’ choices and preferences in the advanced stage Parkinson’s disease.
Background: Surveys of patients’ experiences are increasingly recognized as an essential part of quality of care assessment(1) .National Institute of Health and Care Excellence(NICE) recommends that people with PD and their family members or carers should be given an opportunity to discuss the prognosis of their condition promoting people’s priorities, shared decision-making and patient-centred care(2).It suggests palliative care team should be involved regardless of stage of the disease and should offer discussions about end of life care.
Method: A questionnaire was drafted and given to patients attending Parkinson’s MDT clinic at Royal Berkshire Hospital, Reading UK and also to the members of the Reading branch of Parkinson’s UK.The survey included questions related to information about ACP in complex PD, side effects of medications, advice about support services, involvement of palliative care team including discussions about end of life care and any suggestions that patients might have.
Results: 34 responses were obtained.41%(14/34) were completed by patients ,47%(16/34) by relatives and 11%(4/34) by carers.68%(23/34) patients reported receiving information about advanced stage PD and 59%(20/34) being given information about side effects of medications.71%(24/34) patients reported receiving information about support services.Only 41% (14/34) had prior knowledge of ACP in complex PD and majority 65%( 22/34) were not keen to discuss future options with the MDT team.62%(21/34) of patients were interested in discussing End of life care in advanced PD while 68%(23/34) patients were in favour of involving palliative care team in their future care.Interesting comments were also received in the free text.
Conclusion: Understanding patients’ choice and preferences in context of advance PD is indeed complex.Majority of our patients seem to have a reasonable understanding of complex stage of PD, but were not keen to know about the process of ACP. Unsurprisingly more than 60% of patients wanted holistic care towards their end of life with input from palliative care.While NICE guidelines recommend discussions about disease progression,prognosis and end of life care regardless of stage of PD,sensitive issues about ACP in PD should be explored on an individual’s symptoms and preferences(3).
References: 1-https://doi.org/10.1016/j.parkreldis.2012.05.017 2-NICE guidelines CG71 3-https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5575483/
To cite this abstract in AMA style:
M. Khwaja, A. Chatterjee. Patient survey on personal preferences and choices regarding Advance Care Planning(ACP) in Parkinson’s Disease(PD) [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/patient-survey-on-personal-preferences-and-choices-regarding-advance-care-planningacp-in-parkinsons-diseasepd/. Accessed May 15, 2025.« Back to MDS Virtual Congress 2020
MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-survey-on-personal-preferences-and-choices-regarding-advance-care-planningacp-in-parkinsons-diseasepd/