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)

King's College London0 sites350 target enrollmentJanuary 21, 2015

Overview

2020 Results article in https://pubmed.ncbi.nlm.nih.gov/32857151/ results (added 02/09/2020) 2017 Other publications in https://pubmed.ncbi.nlm.nih.gov/28774963/ (added 15/02/2023) 2020 Results article in https://pubmed.ncbi.nlm.nih.gov/32902934/ (added 15/02/2023)

Registry

who.int

Start Date

January 21, 2015

End Date

January 31, 2019

Last Updated

2 years ago

Study Type

Interventional

Sex

All

Sponsor

•1\. Adults (aged 18 years or over) severely affected by advanced or progressive stages of the long\-term neurological conditions (LTNCs) of either\*:
•1\.1\. Multiple Sclerosis (MS) \- patients with either aggressive relapsing disease with rapid development of fixed disability or those with advanced primary or secondary progressive disease, often with limitation in a number of areas including gait and upper limb function. We do not define referral based on disability but would expect most patients to have an Expanded Disability Status Scale (EDSS) of at least 7\.5
•1\.2\. Parkinsonism \& related disorders (PRDs) i.e.
•1\.2\.1\. Idiopathic Parkinson’s Disease (IPD), Hoehn and Yahr (H\&Y) stages 4\-5 OR
•1\.2\.2\. Progressive Supranuclear Palsy (PSP) Hoehn and Yahr (H\&Y) stages 3\-5 OR
•1\.2\.3\. Multiple System Atrophy (MSA) \- Hoehn and Yahr (H\&Y) stages 3\-5
•1\.3\. Motor Neurone Disease (MND) all stages
•2\. Who are deemed (by referring/usual care clinicians) to have:
•2\.1\. An unresolved symptom (e.g. pain or another symptom) which has not responded to usual care
•2\.2\. AND at least one of the following: unresolved other symptoms (e.g. breathlessness, nausea/vomiting, spasticity, fatigue); cognitive problems; complex psychological (depression, anxiety, loss, family concerns), communication/information problems and/or complex social needs.

•Patients who meet the inclusion criteria but:
•1\. Are already receiving specialist palliative care
•2\. Lack capacity and have no family member, friend or informal caregiver who is willing and available to complete questionnaires about their own and the patient’s symptoms and circumstances