How integrated are neurology and palliative care services? Results of a multicentre mapping exercise.

On Behalf Of Optcare Neuro ,Liesbeth M Van Vliet,Eli Silber,Daniel Difrancesco,Carolyn Young,Irene J Higginson,Wei Gao,Rachel Quibell,Vincent Crosby,Catherine Evans,Andrew Wilcock,K Ray Chaudhuri,Ammar Al-Chalabi,Farida Malik,Anthony Byrne

doi:10.1186/s12883-016-0583-6

Abstract

BackgroundPatients 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.MethodsThe 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.ResultsCentres 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).ConclusionsThis 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 materialThe online version of this article (doi:10.1186/s12883-016-0583-6) contains supplementary material, which is available to authorized users.

Highlights

Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement
Patients severely affected by progressive long-term neurological conditions such as Multiple Sclerosis (MS), Parkinson’s Disease (PD), Multiple-System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), and Motor Neuron Disease (MND) have unmet physical and psychological needs [1, 2], similar to cancer patients [3] and experience problems in coordination and continuity of care [4]
Neurological diseases are heterogeneous and in our sample, MS patients were seen least by specialist palliative care, followed by Parkinsonism and MND

Summary

Introduction

Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. Parkinsonism patients experience on average more than 10 symptoms [5], which include many non-motor symptoms such as fatigue or psychological problems [6] These diseases pose significant demands on caregivers [7] who experience unmet needs [8]. Such complex, person-focused needs highlight the potential for specialist palliative care involvement. Palliative care aims to deliver physical, psychological, emotional and spiritual care for patients with progressive and serious illness, and their caregivers Despite this recommendation, patients severely affected by neurological conditions often have limited access to specialist palliative care services [10]

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