OPTCARE Neuro
Research type
Research Study
Full title
Evaluation of the clinical and cost-effectiveness of Short-term Integrated Palliative Care Services (SIPC) to OPTimise CARE for people with advanced long-term Neurological conditions (OPTCARE Neuro)
IRAS ID
140633
Contact name
Deborah Tonkin
Contact email
Duration of Study in the UK
3 years, 6 months, days
Research summary
Long-term neurological conditions (LTNCs) are usually progressive conditions, although some have a sudden onset and affect approximately 10 million people in the UK. In the later or more advanced stages those affected can have profound symptoms and problems. Unfortunately their care can be suboptimal. Palliative care has been suggested in NHS policy documents, such as the National Service Framework for LTNCs (quality standard 9), as a way to better help people severely affected by these illnesses. But it has not been rigorously tested, and various different models operate. Usually people only receive palliative care at the very end of life.
An alternative to this is Short-term Integrated Palliative Care(SIPC), which offers support integrated with existing services, does not require patients to be close to death or dying and yet offers short term personalised palliative care, integrated with neurology and rehabilitation services, to improve symptom management and promote patient and family strategies in managing the condition. This approach was tested in a phase II trial for people severely affected by multiple sclerosis. Although some services are starting to provide this type of support it has not been tested more widely.
The purpose of this study is to examine the effectiveness and cost-effectiveness of SIPC in improving symptoms and quality of life, and reducing hospital utilisation and caregiver burden for people severely affected by long-term neurological conditions (LTNCs). These will include Multiple Sclerosis (MS), Motor Neurone Disease(MND)and Parkinsonism and related disorders.
The study will determine whether an earlier referral to palliative care has an effect, whether this effect lessens over time and also when re-referral and or re assessment for palliative care needs should be undertaken.
It will also help understand ways in which specialist neurological teams can work most effectively with their local specialist palliative care teams.
SIPC stands for Short-Term Integrated Palliative care, which is a short-term service usually comprising 3 contacts provided by local specialist palliative care teams, working in an integrated way with neurology and others. SIPC is offered when patients are severely affected by their illness and problems, who are highly complex and are at high risk of hospital admissions with a high need for care. It will be offered by existing Multiprofessional Palliative Care Teams (MPCTs), linked with local neurology and rehabilitation services. The service follows a standard procedure. All staff involved in the study will be provided with a standard manual and trained in advance of the study commencing. These aspects will be refined during the feasibility and set-up phase. The MPCT comprises individuals specifically trained in palliative care from (at least) backgrounds in medicine, nursing and psychosocial care or social work. The MPCT has regular multidisciplinary meetings to review patients in their care and is able to visit patients at home in the community. For the purpose of this study, the MPCT will operate a key worker process where a specialist team member will take initial responsibility for a patient referred, although the key worker may change during the course of the intervention. Based on their initial and follow-up visits and assessments the key worker generates a problem list with the patient and outlines a proposed action plan, agreed with the patient and family (which is thus individually tailored). This might involve a change in symptom management (e.g. drug change), contact with other services, and/or psychosocial support or counselling during the visit. The key worker reviews and revises, at a multiprofessional team meeting, the problem list, their assessment and the action plan to optimise the management of the patient and caregiver and plan future visits and liaises with other professionals, e.g. to agree medication or service change. The key worker liaises regularly and integrates care with neurologists, nurses, rehabilitation, primary and hospice services to discuss patients of concern. We envisage that most patients will be discharged after around 6-8 weeks, although some (10%) will need continued palliative care involvement.
REC name
London - South East Research Ethics Committee
REC reference
14/LO/1765
Date of REC Opinion
23 Oct 2014
REC opinion
Favourable Opinion