1. How integrated are neurology and palliative care services?:Results of a multicentre mapping exercise
- Author
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Farida Malik, Vincent Crosby, Eli Silber, Carolyn A Young, Rachel Quibell, Liesbeth M. van Vliet, K. Ray Chaudhuri, Andrew Wilcock, Catherine J Evans, Daniel DiFrancesco, Ammar Al-Chalabi, Wei Gao, Irene J Higginson, and Anthony Byrne
- Subjects
Adult ,Male ,medicine.medical_specialty ,Neurology ,Palliative care ,Population ,Staffing ,Clinical Neurology ,Intervention ,Disease ,03 medical and health sciences ,0302 clinical medicine ,Nursing ,Terminal care ,Humans ,Medicine ,030212 general & internal medicine ,Hospice ,education ,Aged ,Service (business) ,education.field_of_study ,business.industry ,Palliative Care ,Integrated care ,Neurodegenerative Diseases ,General Medicine ,United Kingdom ,3. Good health ,Mapping ,Female ,Neurology (clinical) ,End of life care ,Home ,business ,End-of-life care ,Neurology, Palliative care, Integrated care, Intervention, Mapping, End of life care, Terminal care, Hospice, Home ,030217 neurology & neurosurgery ,Research Article - Abstract
Background Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services. Methods The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships. Results Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson’s Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9–88 MND, 3–25 Parkinsonism, and 0–5 MS). Conclusions This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness. Electronic supplementary material The online version of this article (doi:10.1186/s12883-016-0583-6) contains supplementary material, which is available to authorized users.
- Published
- 2016