Clinical and cost-effectiveness of short-term integrated palliative care services to optimise care for people with advanced long-term neurological conditions (OPTCARE Neuro)

South LondonGeneric Health Relevance
Start Date: 1 Apr 2014 End Date: 30 Jul 2018

Clinical and cost-effectiveness of short-term integrated palliative care services to optimise care for people with advanced long-term neurological conditions (OPTCARE Neuro)

OPTCARE Neuro 

'OPTCARE Neuro' is a clinical trial testing the effectiveness of a new service that seeks to improve quality of life for people who are severely affected by multiple sclerosis, motor neurone disease or Parkinsonism and related disorders (idiopathic Parkinson’s disease, progressive supranuclear palsy and multiple system atrophy). The trial was adopted by the CLAHRC South London Executive in November 2015.

The new service is called short-term integrated palliative care: it provides extra support for people who have one of these neurological conditions, and helps them plan future care. ‘The new service aims to improve the quality of life for individuals with these conditions and their loved ones, by providing the care and support they feel they need,’ says trial manager Dr Nilay Hepgul. ‘Highly skilled health professionals provide additional one-to-one support for many different health needs – physical, social, emotional, spiritual and/or psychological – for up to two months.’

The research team wants to find out if this sort of service can improve people’s quality of life, management of pain and other symptoms, whether it can help keep people out of hospital, and whether it is cost-effective.

Professor Irene Higginson, who leads palliative and end of life care research within the CLAHRC South London is chief investigator for OPTCARE Neuro (which stands for ‘Evaluation of the clinical and cost-effectiveness of short-term integrated palliative care services to optimise care for people with advanced long-term neurological conditions’).

She is working with researchers and clinicians from the University of Nottingham, the Walton Centre in Liverpool, Cardiff & Vale University Health Board and Sussex Community NHS Trust where the experimental service is being offered by existing teams of palliative care professionals. The research team has trained the teams and produced a manual detailing how short-term integrated palliative care should be provided to ensure participants in the trial are offered the same service, wherever they live.

Participants in the trial are randomly allocated to receive either short-term integrated palliative care (in addition to their regular NHS care), or regular care alone. After 12 weeks, those receiving regular care alone will also be offered the new service.

Participants and their caregivers are asked to complete questionnaires about symptoms, quality of life, mood and service use at the start of the study, then at six 12, 18 and 24 weeks thereafter. The research team will also collect information about hospital admissions from participants’ clinical records. After receiving the new service, a small number of people will be invited to talk more about their experiences in an in-depth interview.

OPTCARE Neuro started in April 2014 and is due to finish in 2017. The trial is supported by £1.3 million funding from the NIHR Health Services and Delivery Research Programme.

To find out more, visit the Health Services and Delivery Research Programme website or the Cicely Saunders Institute website.

Contact 
Professor Irene Higginson
irene.higginson@kcl.ac.uk