OPTCARE Neuro is a randomised trial aiming to determine the effectiveness and cost-effectiveness of Short-term Integrated Palliative care (SIPC) for people severely affected by long-term neurological conditions including: Multiple Sclerosis, Idiopathic Parkinson's Disease, Multiple System Atrophy, Progressive Supranuclear Palsy and Motor Neurone Disease. The trial is running in 6 centres across the United Kingdom with an aim to recruit 356 patients plus their caregivers. Participants enrolled in the trial are randomised to either receive the Short-term Integrated Palliative care service immediately, or after a 12 week waiting period. Our research nurses visit participants in their own homes on 5 occasions over 6 months. During these visits participants are asked to complete questionnaires about their physical and emotional health and asked about their concerns and views about the healthcare they receive. For a group of patients, extra qualitative interviews will be held about their experiences of receiving Short-term Integrated Palliative care. To date we have recruited 287 patients and 189 caregivers.
Short-term integrated palliative care (SIPC): Our aim is to provide additional support to people living with neurological conditions and the people closest to them. The SIPC is delivered by multiprofessional palliative care teams and consists of approx. 3 visits over 6-8 weeks: – 1st visit - comprehensive assessment, agree plan, make recommendations, treatment, liaison – 2nd visit/contact - review response, assess further actions needed, possible advanced care plan – 3rd visit and discharge - final review/actions, discharge plan
Trial Sites:
Key Publications: Hepgul N et al. Integrating palliative care into neurology services: what do the professionals say? BMJ Supportive & Palliative Care [In press] Gao W, et al. Psychometric Properties of a Generic, PatientCentred Palliative Care Outcome Measure of Symptom Burden for People with Progressive Long Term Neurological Conditions. PLoS One. 2016 van Vliet LM, et al. How integrated are neurology and palliative care services? Results of a multicentre mapping exercise. BMC Neurology. 2016
If you would like more information please visit our webpage: tinyurl.com/optcareneuro Or contact us on: optcareneuro@kcl.ac.uk Follow us on twitter: @optcareneuro This study is funded by the National Institute for Health Research HS & DR programme (Ref No. 12/130/47)