Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disorders.
Prion diseases, of which Creutzfeldt-Jakob disease is the most common, are fatal neurodegenerative disorders and are often rapidly progressive. They are associated with a significant palliative care burden for patients and families, ranging from prognostic uncertainty to complex symptom management t...
| Publicado en: | Age & Ageing Vol. 55; no. 7; pp. 1 - 19 |
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| Autores principales: | , , , , , , , , , |
| Formato: | Artículo |
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Oxford University Press / USA
Jul2026
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| Materias: | |
| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ssf&AN=195867361&site=ehost-live header: @attributes: shortDbName: ssf uiTerm: 195867361 longDbName: Social Sciences Full Text (H.W. Wilson) uiTag: AN controlInfo: bkinfo: jinfo: jid: 00020729 AGA jtl: Age & Ageing issn: 00020729 maglogo: N pubinfo: dt: Jul2026 vid: 55 iid: 7 pid: 622 pub: Oxford University Press / USA artinfo: ui: 195867361 10.1093/ageing/afag206 ppf: 1 ppct: 18 formats: tig: atl: Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disorders. aug: au: Ng, Melissa Grundy, Anna Appleby, Brian Awe, Terri Carey, Matthew Chan, Edgar Chin, Chloe Diver, Ruth Hermann, Peter Kovacevich, Alexsandra affil: National Prion Clinic, National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, London, UK Department of Palliative Care, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UK National Prion Disease Pathology Surveillance Center, Case Western Reserve University School of Medicine, Cleveland, OH, USADepartment of Neurology, Case Western Reserve University School of Medicine, Cleveland, OH, USADepartment of Psychiatry, Case Western Reserve University School of Medicine, Cleveland, OH, USA National CJD NHS Nursing Service, NHS Lothian, Edinburgh, UK Department of Palliative Care, Oxford University Hospitals NHS Foundation Trust, Oxford, UK Department of Neuropsychology, National Hospital for Neurology and Neurosurgery, London, UK Department of Palliative Care, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK National Reference Center for Surveillance of TSE, University Medical Center Göttingen, Göttingen, Germany Department of Psychiatry, Case Western Reserve University School of Medicine, Cleveland, OH, USA su: United Kingdom Families & psychology Health literacy Palliative treatment Interprofessional relations Social case work Pain Social support Psychology of caregivers Advance directives (Medical care) Social stigma Cognition Genetic testing Creutzfeldt-Jakob disease diagnosis Medical protocols Prion diseases Creutzfeldt-Jakob disease Infection control Hydration Seizures (Medicine) Health care teams Symptoms sug: subj: Families & psychology Health literacy Palliative treatment Interprofessional relations Social case work Pain Social support Psychology of caregivers Advance directives (Medical care) Social stigma Cognition Genetic testing United Kingdom Medical Laboratories Other Individual and Family Services Creutzfeldt-Jakob disease diagnosis Medical protocols Prion diseases Creutzfeldt-Jakob disease Infection control Hydration Seizures (Medicine) Health care teams Symptoms keyword: copyrightHolder:British Geriatrics Society copyrightYear:2026 creutzfeldt-jakob disease dementia diagnosis https://dx.doi.org/10.1093/ageing/afag206 inLanguage:en older people palliative care prion disease prion diseases publisher:Oxford University Press rapidly progressive dementia sameAs:https://pubmed.ncbi.nlm.nih.gov/42472622/ copyrightHolder:British Geriatrics Society copyrightYear:2026 creutzfeldt-jakob disease dementia diagnosis https://dx.doi.org/10.1093/ageing/afag206 inLanguage:en older people palliative care prion disease prion diseases publisher:Oxford University Press rapidly progressive dementia sameAs:https://pubmed.ncbi.nlm.nih.gov/42472622/ ab: Prion diseases, of which Creutzfeldt-Jakob disease is the most common, are fatal neurodegenerative disorders and are often rapidly progressive. They are associated with a significant palliative care burden for patients and families, ranging from prognostic uncertainty to complex symptom management to caregiver distress. Healthcare professionals face unique pressures when caring for these patients, which can include a lack of familiarity with this rare diagnosis and rapidly evolving symptom needs due to accelerated clinical deterioration. We convened a multidisciplinary panel of experts from around the UK, including palliative care doctors, general practitioners, physician and nurse specialists in prion diseases, and a lived experience representative to compile practical, consensus-based recommendations for managing prion diseases, much of which can also be applied to other rapidly progressive dementias. In this article, we examine the available evidence base for managing various aspects of prion diseases. Where evidence is limited, we suggest best practices informed by decades of our collective experiences. pubtype: Academic Journal doctype: Article src: R language: English refInfo: copyright: @attributes: flag: N holdings: @attributes: islocal: N |
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