Significant pain experienced by patients approaching the end of life living within the community Signs and Symptoms Pain
Conditions
Interventions
Sponsors
Eligibility
Inclusion criteria
Inclusion criteria: Patients will be included if they are: 1. Approaching the end of life - defined as patients with an incurable advanced disease, considered to be within the last year of life 2. Experiencing significant pain: assessed using Brief Pain Inventory (BPI) and defined as a score of =>4/10 pain severity sub-scale and =>4/10 pain impact sub-scale 3. Treated with, or starting, opioid analgesia 4. Experiencing, or anticipating, adverse effects of nausea, constipation and drowsiness 5. Living at home and being cared for by specialist palliative care services in West Yorkshire and Hampshire. Staff will be included if they are: 1. Clinical Nurse Specialists (CNSs) part of a community palliative care team 2. Service providers or managers of specialist palliative care services 3. Local commissioners of palliative care services 4. Working within palliative care services in West Yorkshire and Hampshire
Exclusion criteria
Exclusion criteria: Patients will be excluded if they lack capacity to consent to inclusion
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Average pain intensity measured using the Brief Pain Inventory (BPI) | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Neuropathic pain: Self-administered Leeds Assessment of Neuropathic pain Symptoms and Signs (S-LANSS) 2. Self-efficacy: Patient Activation Measure (PAM) 3. Cognitive representation of medications: Beliefs about Medicines Questionnaire (BMQ) 4. Intensity of common symptoms: Edmonton Symptom Assessment System (EASA) 5. Carer experience: Family Pain Questionnaire (FPQ) 6. Health-related quality of life: European Quality of life - 5 Dimensions (EQ-5D) questionnaire 7. Satisfaction with information: Satisfaction with Information about Medicines Scale (SIMS) 8. Patient records: We will ask patients to give their consent for us to check their patient and pharmacy records. From these records we will collect data on healthcare resource use, date and place of death | — |
Countries
England, United Kingdom