People with long term neurological conditions such as Parkinson’s disease, motor neurone disease and multiple sclerosis may have important needs that are not met within standard care. Palliative care considers the whole person, not just the illness, and aims to manage pain and other distressing symptoms while also providing psychological, social and spiritual support for the person and their unpaid carers.
The OPTCARE Neuro study is the largest published trial of palliative care in people with a variety of long-term neurological conditions. It set out to determine the effectiveness – and cost-effectiveness – of short-term integrated palliative care (SIPC).
The SIPC model was designed to integrate care across palliative, neurology and social care services to ensure continuity of care. The OPTCARE Neuro study examined the impact of this integrated approach on symptoms, patient outcomes, carers and hospital use.
The study found that SIPC reduced the overall cost of care compared to standard care. There were no major differences in patient outcomes between the two groups, but some physical and neurological benefits were seen in the group who received SIPC.
What’s the issue?
Palliative care is increasingly recognised as being valuable for people with long term neurological conditions. However, there is currently limited evidence on how and when palliative care should be delivered, and which elements of it are most important.
This study aimed to explore the potential benefits of SIPC for patients and carers, along with the impact on health and social care costs, including a possible reduction in hospital use.
SIPC was delivered by multi-professional palliative care teams and tailored to individual patients’ needs. It included a comprehensive and holistic palliative care assessment followed by care planning and referral to, or liaison with, other care providers. Trial participants received three face-to-face visits, with phone calls in between, over six to eight weeks.
The study covered seven UK centres that have multi-professional palliative care teams and neurology services. It included 350 patients and 229 unpaid carers who were randomly allocated to two groups: SIPC and standard care. All patients and carers continued to receive their usual care from neurology services, GPs, and social services.
Patients’ quality of life, physical and psychological symptoms, and satisfaction with their care were assessed. The burden on unpaid carers, costs, and any harm sustained were assessed.
This study showed that, at 12 weeks, there were no major differences between the two groups. However, it found that:
- people receiving SIPC showed an improvement for some physical symptoms such as pain, sleep disturbance, nausea, and bowel problems
- costs were £562 cheaper per patient in the SIPC group, mainly driven by a reduction in hospital stays; informal care costs were similar in both groups
- SIPC was well-received by patients and unpaid carers while satisfaction with care fell in the standard group
- deaths and hospitalisations remained similar in both groups
- neither the costs to unpaid carers, nor the burden on caregivers, changed in either group; this is important because maintaining patients in the community can increase the burden on unpaid carers and families.
A smaller group of participants took part in more in-depth interviews to further explore their experiences of SIPC. The most valued aspects of SIPC were enabling patients to build resilience and maintain stability, and empowering carers to care.
The findings suggest that SIPC offers improvement in physical symptoms at a lower cost and without harmful effects when compared with standard care.
Why is this important?
People with long term neurological conditions experience deterioration in their quality of life, and they require significant support from health and social care services. The conditions put pressure on unpaid carers and are a major health and economic burden.
Alongside physical symptoms such as pain, breathlessness, nausea and increasing fatigue, people who are approaching the end of their lives may also experience anxiety, depression, and social and spiritual difficulties.
NICE guidelines state that people with advanced life-threatening illnesses and their families should expect good end of life care, whatever the cause of their condition.
The OPTCARE Neuro study is the largest palliative care trial conducted to date in people with a variety of long term neurological conditions. The findings highlight the need for better integration of services, between specialties and across health and social care systems, to deliver optimal holistic care.
Future research should focus on refining palliative care approaches for long term neurological conditions, including better integration between neurology and palliative care, and improved management of symptoms.
The researchers say the cost benefits seen with SIPC need closer examination. The reductions in inpatient care (including hospital stays) and rehabilitation service use could explain part of the reduction in health and social care costs, but this needs further exploration.
There is a need to better understand what triggers a first referral for palliative care, and then a re-referral, given the long term nature of these conditions. Research should explore how the model of care can be improved, they say.
You may be interested to read
The full paper: Hepgul N, and others. Immediate versus delayed short-term integrated palliative care for advanced long-term neurological conditions: the OPTCARE Neuro RCT. Health Services and Delivery Research. 2020. doi: 10.3310/hsdr08360
Study examining short-term impact of integrated palliative care: Gao W, and others. Effect of Short-term Integrated Palliative Care on Patient-Reported Outcomes Among Patients Severely Affected With Long-term Neurological Conditions: A Randomized Clinical Trial. JAMA Netw Open. 2020;3:e2015061
Investigation into patient experiences of health and social care services in long-term neurological conditions: Peters M, and others. Patients’ experiences of health and social care in long-term neurological conditions in England: A cross-sectional survey. J Health Serv Res Policy. 2013;18:28–33
Study on how neurology and specialist palliative care services interact: Liesbeth M, and others. How integrated are neurology and palliative care services? Results of a multicentre mapping exercise. BMC Neurology. 2016;16:63
This study was funded by the NIHR Health Services and Delivery Research programme.