Katarina Rukavina, Alessandra Solari, Marianne de Visser, Ludo Vanopdenbosch, Magdalena Krbot Skoric, Maria Lolich, Lucia Pavlakova, David Oliver, Simone Veronese
{"title":"长期神经系统疾病的成人保健：欧洲神经病学学会成员调查。","authors":"Katarina Rukavina, Alessandra Solari, Marianne de Visser, Ludo Vanopdenbosch, Magdalena Krbot Skoric, Maria Lolich, Lucia Pavlakova, David Oliver, Simone Veronese","doi":"10.1136/spcare-2025-005504","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0000,"publicationDate":"2025-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Healthcare for adults with long-term neurological conditions: European Academy of Neurology Members Survey.\",\"authors\":\"Katarina Rukavina, Alessandra Solari, Marianne de Visser, Ludo Vanopdenbosch, Magdalena Krbot Skoric, Maria Lolich, Lucia Pavlakova, David Oliver, Simone Veronese\",\"doi\":\"10.1136/spcare-2025-005504\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>\",\"PeriodicalId\":9136,\"journal\":{\"name\":\"BMJ Supportive & Palliative Care\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":2.0000,\"publicationDate\":\"2025-07-10\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"BMJ Supportive & Palliative Care\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1136/spcare-2025-005504\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"BMJ Supportive & Palliative Care","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1136/spcare-2025-005504","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
Healthcare for adults with long-term neurological conditions: European Academy of Neurology Members Survey.
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.
期刊介绍：
Published quarterly in print and continuously online, BMJ Supportive & Palliative Care aims to connect many disciplines and specialties throughout the world by providing high quality, clinically relevant research, reviews, comment, information and news of international importance.
We hold an inclusive view of supportive and palliative care research and we are able to call on expertise to critique the whole range of methodologies within the subject, including those working in transitional research, clinical trials, epidemiology, behavioural sciences, ethics and health service research. Articles with relevance to clinical practice and clinical service development will be considered for publication.
In an international context, many different categories of clinician and healthcare workers do clinical work associated with palliative medicine, specialist or generalist palliative care, supportive care, psychosocial-oncology and end of life care. We wish to engage many specialties, not only those traditionally associated with supportive and palliative care. We hope to extend the readership to doctors, nurses, other healthcare workers and researchers in medical and surgical specialties, including but not limited to cardiology, gastroenterology, geriatrics, neurology, oncology, paediatrics, primary care, psychiatry, psychology, renal medicine, respiratory medicine.
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