Background: The number of people living with long-term neurological conditions (PwLTNC) in Europe is on the rise and they experience a variety of complex symptoms, often requiring hospital admissions. This survey explored challenges healthcare professionals are encountering when providing care for PwLTNC.
Methods: A web-based survey was developed by the European Academy of Neurology (EAN) Scientific Panel on Palliative Care and disseminated by the EAN Scientific Department through the official mailing list, website and newsletter in the period 3 January 2024 to 27 February 2024. The United Nations' geoscheme for Europe was applied and differences between the North/West vs South/East/Greater European regions analysed.
Results: A total of 153 EAN members (50% women, mean age 48 years) were participated. They expressed their dissatisfaction with the availability of long-term healthcare, including palliative care (60%), psychosocial (67%) and spiritual support (60%) offered to PwLTNC, their families and carers, the resources to provide healthcare for PwLTNC in medical emergencies and knowledge of acute medical staff about PwLTNC (45%). Dissatisfaction with the availability of resources needed to provide healthcare for PwLTNC, the psychosocial support offered to PwLTNC and the extent of advance care planning implementation was more frequently reported in South/East/Greater Europe compared with North/West Europe.
Conclusion: This survey of the EAN members revealed dissatisfaction with long-term healthcare, including palliative care, offered to PwLTNC, their families and carers and pointed out healthcare disparities between the two European macroregions, with more critical figures in South/East/Greater Europe.
Keywords: Advance Care Planning; Advance Directives; Chronic conditions; Communication; Neurological conditions; Palliative Care.
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