7 October 2021

People with Parkinson’s disease (PD) in an advanced stage suffer from a wide range of symptoms  for which palliative care can be beneficial. Research from the point of view of patients in late stage PD is scarce, due to their vulnerable situation as well as often occurring cognitive comorbidities such as dementia, hallucinations or depression.

Radboudumc researchers Herma Lennaerts, Marieke Groot and colleagues therefore set out a case study in which they included patients for whom the answer to the question “Would you be surprised if this patient died in the next 12 months?” was negative. They interviewed patients and their family caregivers at three points during one year. The results of their study are published Journal of Parkinson’s Disease, on September 15th.

Their study underlines the finding that patients experience many difficulties in daily living due to a wide range of symptoms. However, the patients seem to adapt to living with these difficulties and they rated their overall quality of life as quite moderate to positive. Furthermore, family caregivers became experts in providing care to their loved ones, but often learned on their own. Palliative care was not implemented and care goals often focused on further treatment, despite the awareness of patients about their limited medical opportunities and their primary wish for just a sympathetic ear.

The title of their article refers to a patients’ quote: “No One Can Tell Me How Parkinson’s Disease Will Unfold”. This can be interpreted as a quote pointing at the experienced lack of adequate information on advanced PD. Although healthcare professionals cannot predict what might occur, more evidence becomes available on patients’ symptoms, their (unmet) needs and experiences as well as beneficial palliative care interventions. Their tasks are to provide information in order to support patients and family caregivers on what might be expected at advanced stage and to support them in revealing what their wishes are for life-limiting treatment and advance directives.

Publication

Lennaerts-Kats, H., Ebenau, A., van der Steen, J. T., Munneke, M., Bloem, B. R., Vissers, K. C., ... & Groot, M. M. “No One Can Tell Me How Parkinson’s Disease Will Unfold”: A Mixed Methods Case Study on Palliative Care for People with Parkinson’s Disease and Their Family Caregivers. Journal of Parkinson's Disease, (Preprint), 1-13.

This study is part of a national project called ParkinsonSupport which aims is to improve palliative care for PD by research and developing new interventions. The study was conducted by the department of Neurology and Radboudumc expertise center for Pain & palliative care.

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