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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.

What’s new?

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.

What’s next?

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

NICE guidance on palliative care (2020)


Funding: This study was funded by the NIHR Health Services and Delivery Research programme.

Conflicts of Interest: Some authors were previously members of the Health Technology Assessment study boards.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

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Study author

The difference in patient-reported outcomes between the groups was small and did not indicate that SIPC was superior to standard care. However, the qualitative interviews showed that the additional support SIPC offered to patients and their families was well-received and welcomed.

The study showed that patients with long term neurological conditions, with highly complex care needs, and their unpaid carers, may be better supported by integrating palliative care without increasing the costs.

For wider implementation, SIPC needs to be refined and better integrated with existing services. Given the long term nature of these conditions, the timing for referral to palliative care services also needs further work. For example, multiple recent hospital admissions could be a criteria for referrals rather than referring when patients are in a more stable phase of their condition.

Nilay Hepgul, Research Fellow, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London

Lived experience

This paper highlights the complexity of providing palliative care services to people living with long-term neurological conditions. Palliative care is not just about symptom management, it is about having an integrated, person-centred approach, that takes into consideration the physical, psychological, social and spiritual needs of the patient. It is important that service providers also consider the needs of family carers and providing effective support strategies for them.

Further exploration of patient experience and satisfaction with the palliative care they receive should take all their needs into account. It is also important to explore pathways that enable health and social care professionals to provide and integrate palliative care services for those living with long term neurological conditions.

Nicki Haywood, former carer, Hednesford, Staffordshire

Nurse specialist

This publication is a timely reminder that requirements of the National Service Framework for those living with long term neurological conditions continue to be poorly implemented. It demonstrates that there are benefits to patients, carers and the organisation by using short-term integrated palliative care; therefore guidelines and policy should be revisited.

Research shows that this is a poorly-served group of patients in many ways and for diverse reasons. With present health service delivery, the pandemic, current and future funding, and without energetic promotion of their needs, improvement is likely to continue to be slow.

The on-going reorganisation within primary care promotes the opportunity for Integrated Care Systems to respond sensitively to local need. Partnership with voluntary sector organisations such as hospices and condition-specific societies could be influential. The demonstrated improvements in patient and carer satisfaction and cost savings should make the outcomes attractive to commissioners.

Sheila Markham, retired Clinical Nurse Specialist in Palliative Care, Nottingham

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