Topic: Dementias and neurodegeneration, Neurological disorders Nervous System Diseases
Conditions
Interventions
Participants will be randomly allocated to either receiving the intervention immediately or after an (approximately) 12 week waiting period (after the second interview is completed and reviewed). The
Sponsors
King's College London
King's College Hospital
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Patients: 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 AND 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. AND 3. Who are able to give informed consent^ OR where their capacity can be enhanced^ (e.g. with information) so they can give informed consent OR where a personal consultee^ can be identified and approached to give an opinion on whether or not the patient would have wished to participate in the study. AND 4. Are living in the catchment area of the Short-term Integrated Palliative Care Service (SIPC) Patients are expected to be in the advanced or progressive stages of disease. They may be living at home (most common), in a nursing home or in hospital at the time of recruitment. A proforma will be developed for referring clinicians to complete (covering contact and clinical information and important reasons for referral/selection). Caregivers: 1. Adults (aged 18 years or over) identified by the patient as the person closest to them, usually a family member, close friend, informal caregiver or neighbour. 2. Able to give informed consent to complete the questionnaires Notes: * Diagnosis must have been established by a specialist neurological assessment ^ When a person lacks capacity to consent for themselves the procedures detailed in the Mental Capacity Act (2005) are adhered to
Exclusion criteria
Exclusion criteria: 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
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Current primary outcome measures as of 01/02/2017: A combined score of 8 key items from the Integrated Palliative care Outcome Scale for neurological conditions (IPOS Neuro-S8), measured at 12 weeks post randomisation Previous primary outcome measures: A combined score of key symptoms, measured at 12 weeks post randomisation | — |
Secondary
| Measure | Time frame |
|---|---|
| Current secondary outcome measures as of 01/02/2017: 1. Patients’ other symptoms and palliative care needs, measured using the Integrated Palliative care Outcome Scale for neurological conditions (IPOS Neuro) 2. Patients’ health-related quality of life and well-being, measured using the EuroQoL (EQ-5D) and the ICEpop Capability measure for Adult (ICECAP-A) 3. Patients’ psychological distress, measured using the Hospital Anxiety and Depression Scale (HADS) 4. Patients’ satisfaction, self-efficacy and other aspects, measured using the Modified 16-item measure of patient satisfaction (FAMCARE-P16) and the Self-Efficacy to Manage Chronic Disease Scale (SEMCD) 5. Hospital admissions, length of hospital stay, emergency attendance, survival from consent and deaths and other service use during the course of the study, measured using the Client Service Recipient Inventory (CSRI) 6. Caregiver burden and positivity and quality of life, measured using the 12-item Zarit Burden Inventory (ZBI-12) + positivity, the Veterans Rand 12-item Health survey (VR-12) and the Modified 17-item measure of carer satisfaction (FAMCARE2) 7. Caregiver assessment of patients’ outcomes, measured using some of the same measures (IPOS Neuro & IPOS Neuro-S8) 8. Observer (completed by the researcher) assessment of the patients’ problems, measured using the 6-item Cognitive Impairment Test (6CIT), Modified Fried’s Frailty Criteria, the Northwick Park Dependency Scale (NPDS), the Expanded Disability Status Scale (EDSS), the Australian modified Karnofsky Performance Status (AKPS) and the Support Team Assessment Schedule (STAS) Patients will be assessed for these outcomes at baseline, 6, 12, 18, 24 weeks Previous secondary outcome measures: 1. Patients’ other symptoms and palliative care needs 2. Patients’ health-rel | — |
Countries
England, United Kingdom, Wales
Outcome results
None listed