Palliative care for patients with parkinson’s disease: a UK-based focus group study

BackgroundParkinson’s disease (PD) is a common life-limiting neurodegenerative condition. As far as we are aware, no study to date has looked holistically at how palliative and end of life care is delivered for patients with PD in the UK from the perspective of healthcare professionals. To address this knowledge gap, a focus group of experts in the fields of palliative care and Parkinson’s disease was held to determine the current landscape of care and areas where care could be improved.MethodsAn exploratory qualitative focus group took place online in December 2020 with twelve clinicians comprising physicians, nurses and a pharmacist from a range of speciality backgrounds and geographical areas. The focus group was recorded and transcribed verbatim. Analysis was conducted using an iterative approach based on inductive coding by two independent reviewers to categorise the data into themes and sub-themes.ResultsFour major themes were identified: i) Patient centred care - clinicians felt that lack of personalised care meant that assessment and management of symptoms was sub-optimal ii) Navigating advance care plans - clinicians expressed difficulty in initiating and engaging in ACP discussions, as well as facilitating patient adaptability iii) Uncertainty - uncertainty of both the clinician and the patient was felt to be a barrier to the delivery of quality care iv) Strengthening care across different settings – clinicians stressed the importance of strengthening support in community and primary care settings, with the role of a coordinating keyworker being advocatedConclusionMeaningful relationships between patients and healthcare professionals, as well as services and settings, are the foundation of providing high quality care. New ways of delivering care due to the COVID-19 pandemic have been continued, such as video consultations. This focus group provided a rich discussion and has been used as springboard to develop a Delphi study to develop gold standards in palliative care for patients with PD.

The impact of COVID-19 on palliative care for people with Parkinson's and response to future pandemics.

Introduction: Although in some countries, palliative care (PC) still remains poorly implemented, its importance throughout the course of Parkinson's disease (PD) is increasingly being acknowledged. With an emergence of Severe Acute Respiratory Syndrome Coronavirus-2 (SARS-CoV-2) pandemic, growing emphasis has been placed on the palliative needs of people with Parkinson's (PwP), particularly elderly, frail, and with comorbidities.Areas covered: The ongoing COVID-19 pandemic poses an enormous challenge on aspects of daily living in PwP and might interact negatively with a range of motor and non-motor symptoms (NMS), both directly and indirectly - as a consequence of pandemic-related social and health care restrictions. Here, the authors outline some of the motor and NMS relevant to PC, and propose a pragmatic and rapidly deployable, consensus-based PC approach for PwP during the ongoing COVID-19 pandemic, potentially relevant also for future pandemics.Expert opinion: The ongoing COVID-19 pandemic poses a considerable impact on PwP and their caregivers, ranging from mental health issues to worsening of physical symptoms - both in the short- and long-term, (Long-COVID) and calls for specific, personalized PC strategies relevant in a lockdown setting globally. Validated assessment tools should be applied remotely to flag up particular motor or NMS that require special attention, both in short- and long-term.