Study shows benefits of new palliative care model for patients with neurological conditions

Findings from a large-scale clinical trial testing a new palliative care model have shown to be lower cost, viewed positively by patients and their carers while showing no difference in patient-reported outcomes when compared with standard care.

The Short-Term Integrated Palliative Care (SIPC) model seeks to improve quality of life for patients severely affected by long-term neurological conditions (LTNCs). The trial - OPTCARE Neuro - aimed to investigate how effective this short-term palliative care is and whether it represents good value for money. It is the world's largest palliative care intervention in patients severely affected by LTNCs.

LTNCs represents a major health, economic and societal burden. These conditions lead to substantial deterioration in quality of life (QoL), require lifelong support from health and social care services, and often are an immense strain physically and emotionally on informal caregivers and family members. Palliative care has shown to relieve suffering and improve QoL in patients with advanced cancer. Despite experiencing problems and care challenges similar to patients with cancer, patients with LTNCs are less likely to receive palliative care.

The findings from OPTCARE Neuro provide the most robust evidence to date to support service and policy developments that improve palliative care provision for people with LTNCs in the UK or health care systems similar to the NHS.

The study was led by researchers in the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation at King's College London and funded by the National Institute for Health Research (NIHR). The findings are published in JAMA Network Open.

The SIPC in OPTCARE Neuro included approximately three contacts with a specialist palliative care team. The teams worked closely with specialist neurology teams and other services including GPs, who continued to support patients as usual. The palliative care teams' aim was to enable people to live well with increasing illness by providing the support they need to pursue the things they and the people close to them feel are important, and to plan future care, particularly for when nearing the end of life.

The trial ran across six centres in the UK: London, Nottingham, Brighton and Hove, Liverpool, Cardiff and Ashford & St Peter's and was coordinated by the research team based at the Cicely Saunders Institute.

The evaluation of the SIPC was based on questionnaires completed by both patients and their informal carers, such as family members. Data from 350 patients and 229 caregivers was analysed. Questionnaires from local health care professionals in palliative care and neurology also gathered information about their expectations and experiences of palliative care for this group of patients and referring patients to the study.

While the findings showed SIPC was not statistically significantly different from standard care for patient-reported outcomes, it was associated with lower cost and was well-received by patients and carers. The research team also concluded that more research into refining the Short-Term Integrated Palliative Care model for people with Long Term Neurological Conditions would further support service and policy developments to improve palliative care for this group.

Now that we know now the benefits of this new palliative care model for patients with long-term neurological conditions and their unpaid carers, what we should do next is to test how best to implement it more widely so more people will benefit from it."

Wei Gao, Professor, Co-Chief Investigator & Trial Statistician from King's College London

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