Evaluation of the clinical and cost-effectiveness of Short-term Integrated Palliative Care Services (SIPC) to OPTimise CARE for people with advanced longterm Neurological conditions (OPTCARE Neuro)
A nurse or doctor will visit a patient with advanced multiple sclerosis, motor neurone disease, or Parkinson’s-plus within five working days of referral, assess their uncontrolled symptoms, and coordinate follow-up care over 12 weeks. This matters because people severely affected by these progressive neurological conditions often suffer from pain, breathlessness, nausea, or psychological distress that standard neurology and rehabilitation services do not fully resolve. No robust trial has yet tested whether a short, integrated palliative care package—delivered by existing multiprofessional teams—improves symptom control and quality of life for this group across the UK. If the trial shows that Short-term Integrated Palliative Care (SIPC) works and is cost-effective, the NHS could adopt it as a standard add-on service for patients with advanced long-term neurological conditions. That would mean faster access to symptom relief, better support for caregivers, and fewer unmet palliative needs—without requiring new specialist centres. The economic modelling will tell funders whether the approach saves money overall by reducing hospital visits and emergency care.
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DESIGN: Follows MRC guidance for evaluation of complex interventions: (i) set up, feasibility, mapping; (ii) randomised pragmatic trial of Short-term Integrated Palliative Care (SIPC) offered from a Multiprofessional Palliative Care Team compared to best usual care; (iii) a qualitative component, explores change process, how SIPC might be improved, interprets quantitative results, plus survey of health professionals; (iv) economic modelling. Methods build on those tested in our phase II randomised trial for MS patients, and longitudinal, economic and qualitative studies with patients and caregivers severely affected by these and other longterm conditions. SETTING: Five areas from across the UK; South London, Cardiff, Brighton and Sussex, Liverpool and Nottingham, all with palliative care, neurology/rehabilitation services and sufficient catchment population - representative of people with longterm neurological conditions in mixed urban, suburban and rural areas. TARGET POPULATION: Patients severely affected by advanced or progressive stages of the longterm neurological conditions (LTNCs) of either: • Multiple Sclerosis (MS) - primary or secondary progressive or aggressive relapsing remitting disease • Parkinson’s Plus (PP) i.e. Idiopathic Parkinson’s Disease(IPD) and related movement disorders of Progressive Supranuclear Palsy(PSP) or Multiple System Atrophy(MSA) - stages 3-5 Hoehn and Yahr(H&Y) or related measures for PSP/MSA • Motor Neurone Disease (MND) All are assessed (by clinicians) to have to have a least one unresolved symptom (e.g. pain, breathlessness, nausea/vomiting) which is continuing despite usual care and at least one of the following: 2nd unresolved symptom, cognitive problems; complex psychological (depression, anxiety, loss, family concerns) and/or complex social needs. INTERVENTION: SIPC runs from existing palliative care teams, linked with local neurology and rehabilitation services. Following referral a SIPC keyworker visits and makes a comprehensive palliative care assessment and proposes treatments, within 5 working days. There are 2-4 follow-up visits and referral to other services as appropriate. SIPC is offered in addition to usual services. CONTROL: Best usual services, including nurse specialists, neurology and rehabilitation. DATA COLLECTION: Face to face interviews at baseline (pre-randomisation), and follow up at 6, 12, 18 and 24 weeks. MEASUREMENT OF COSTS AND OUTCOMES: Recorded in face to face interviews with trained interviewers. Primary outcome is combined score of POS-S5 a validated measure of 5 core symptoms: pain, nausea, vomiting, sleeping difficulty and mouth problems at 12 weeks. Costs are estimated at baseline, and at 12-and 24-week follow-up from service use during the previous 12 weeks, recorded using an adapted version of the Client Service Receipt Inventory(CSRI). Secondary outcomes are: caregiver burden, caregiver experience, patient’s psychological distress, quality of life, palliative needs and symptoms recorded by patient, caregiver, presence of future care plans and a short observer (researcher) assessment. We survey health professionals on their views of SIPC. QUALITATIVE COMPONENTS: Interviews and focus groups with patients, families and staff in the set up to explore ways to: enhance recruitment; improve documentation; hone the components of SIPC and how introduced. During the trial: study the recruitment progression; consider any improvements. In order to understand the effects of SIPC we will conduct qualitative interviews with patients, caregivers and professionals to explore their experience of SIPC; explore change process; interpret the quantitative data, ascertain whether other aspects of their care need addressing. SAMPLE SIZE: We recruit 356 patients for the main trial. In view of the advanced illness in this patient group we have allowed 20% attrition (phase II trial attrition from death or illness: 3/52) to the primary 12-week outcome, giv
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