What is OPTCARE Neuro?
The OPTCARE Neuro trial evaluated a new service for people who are severely affected by long-term neurological conditions (LTNCs). These are: Multiple Sclerosis, Parkinsonism and Related Disorders (Idiopathic Parkinson's Disease, Multiple System Atrophy and Progressive Supranuclear Palsy), and Motor Neurone Disease. Those living with these conditions and their family members/carers were invited to participate if they had unresolved symptoms and problems, and were not receiving specialist palliative care.
Specialist Palliative care provides an extra layer of support to people living with these advanced illnesses and the people who are close to them. The palliative care in OPTCARE Neuro was short-term, with approximately 3 contacts with a specialist palliative care team. The palliative care teams offered a comprehensive palliative care assessment and approximately 2 follow-up visits, to review the care and support for patients and their family members. The teams work closely with specialist neurology teams and other services including GPs, who continue to support patients as usual. The palliative care teams aim 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 aimed to investigate how effective this short-term palliative care is and whether it represents good value for money. This evaluation is based on a number of questionnaires completed by both patients and their family members.
Why do we think this is worth doing?
People with LTNCs commonly have physical disabilities affecting their arms, legs, bladder, bowel, eyesight, or speech, as well as other symptoms including pain, spasms and fatigue. In addition, people can experience psychological distress or difficulties with memory and understanding. Over one third of people with LTNCs are estimated to need help with daily living, and nearly one million unpaid carers support someone with a neurological disease.
Earlier phases of neurological illness can be managed well with medical treatments, rehabilitation, care and support. However, in the later stages of these progressive conditions, those affected experience increased problems with greater need for personal, social, psychological and spiritual support. Care needs for those severely affected by LTNCs rise sharply once the disease reaches the more advanced stages. Previous research has shown that these are often not managed well by the existing standard care; patients live with continuing symptoms, emotional and social problems. Their families also carry increasing burdens. While costs to the NHS increase, not all the care given is found to be the most appropriate according to reports from some patients and families, with gaps in coordination between hospital and community care.
How was this done?
The trial ran across 6 centres in the UK: London, Nottingham, Brighton and Hove, Liverpool, Cardiff and Ashford & St Peter's (coordinated by the research team based at the Cicely Saunders Institute, King’s College London). Participants either received the short-term palliative care service straight away, or after a 12 week waiting period (so we can compare the 2 groups). Patients and their close family caregivers completed a variety questionnaires about their health and well-being at the beginning of the trial and then 6-weekly up to 24 weeks. For a group of patients, extra interviews were held to further understand their experiences of the short-term palliative care service. Recruitment into the trial ended in October 2017 and we collected data from 350 patients and 229 caregivers which wwas analysed. We also conducted electronic questionnaires with local health care professionals in palliative care and neurology to gather information about their expectations and experiences of palliative care for this group of patients and referring patients to the study.
Who is involved? – The CSI Research Team
Prof. Irene Higginson - Co Chief Investigator
Dr Wei Gao - Co Chief Investigator & Trial Statistician
Dr Nilay Hepgul - Trial Manager & Research Associate
Dr Sabrina Bajwah - Principal Investigator (London) & Specialist Palliative Care Consultant
Marsha Dawkins - Specialist Palliative Care Clinical Nurse Specialist
Whom should I contact if I have any queries?
Name: Nilay Hepgul
Tel: 020 7848 5805
Fax: 020 7848 5517
OPTCARE Neuro was funded by the NIHR HS&DR programme. Project number: 12/130/47