Extrait

Background and study aims Most people want to be cared for and die at home. As people get weaker in the last weeks or days of life, they usually can’t swallow. In the UK, when this happens, it is standard practice for medicines to be given by a drip under the skin to relieve symptoms. Four symptoms are common in dying people: pain, agitation, nausea and noisy breathing (rattle). These are called breakthrough symptoms. These can happen even when a drip is already in place. When they do, a family member is advised to call a healthcare professional (HCP), usually a district nurse. The nurse will visit and give the patient an injection under the skin, but it can take a long time, often much more than an hour, for the nurse to arrive and give the medicine. This wait can be distressing for patient and carer and the symptom can worsen by the time the nurse arrives. Carers tell us that this makes them feel powerless to help their loved ones. In some countries, like Australia, carers are trained to give symptom-relieving medicine to their dying relatives at home. It is not known whether this approach would be welcomed in the UK, so it needs to be tested. Before doing a large study, it is good practice to first test the feasibility in a smaller group of patients. The aim of this study is to find out whether it is feasible and acceptable for carers to administer medication to dying patients for breakthrough symptoms. Who can participate? Dying patients in the last weeks of life and their carers, aged over 18 What does the study involve? Participants are randomly allocated to either the ‘usual care’ or ‘new care’ group. Carers in the ‘usual care’ group are asked to call a HCP if their loved one has breakthrough symptoms. Carers in the ‘new care’ group are trained how to recognise symptoms, to give injections and then see if they work to relieve the symptom. Carers in both groups are asked to keep a diary of symptoms and treatments. They are invited to talk about how they found the study and the experience of giving injections. What are the possible benefits and risks of participating? Information from this study will help the researchers to understand if a large study, to give a final answer, is possible. Possible benefits of carers administering medication include more rapid symptom control for the patient, and the carer feeling more in control. The risks are increased anxiety for the carer taking on this new role, which should be lessened by the good training the study will provide. Where is the study run from? 1. North Wales Centre for Primary Care Research (UK) 2. Marie Curie Palliative Care Research Centre (UK) 3. Sue Ryder Hospice Gloucestershire (UK) When is the study starting and how long is it expected to run for? November 2016 to May 2019 Who is funding the study? Health Technology Assessment Programme (UK) Who is the main contact? 1. Prof. Clare Wilkinson (public) 2. Dr Marlise Poolman (scientific)

Critère d'inclusion

• End-of-life care

Liens

• isrctn