Improved involvement of multiple sclerosis patients in discussions abo

Other measures (1)

Background and study aims Multiple sclerosis (MS) is one of the most common diseases of the central nervous system (brain and spinal cord). Healthy nerves are coated in a fatty casing (myelin sheath) which helps messages to travel quickly and smoothly along nerves. When a person is suffering from MS, the immune system, which normally helps to protect against infection, attacks the myelin sheath, stripping it from the nerves (demyelination). This demyelination means that messages cannot travel along the nerves effectively, causing a range of problems including loss of vision, problems with balance and coordination as well as fatigue (extreme tiredness), stress and mental health difficulties such as depression. Patients with MS often face difficult decisions about their choice of treatment. The reasons for this are several: the natural course of the disease is unpredictable but potentially serious, there are several new drugs available with different effects, side effects, and risks, and because of the drugs' novelty long-term effects are not well-known, while the disease itself is life-long usually spanning decades. It is hard, even for a doctor, to keep track of all the information available, and even experts will admit uncertainty about choice of treatment. Patient involvement in these situations is a difficult task. Patient involvement in decision-making requires information too be provided during medical encounters. Several studies indicate that doctors do not provide sufficiently structured, precise information and it is often characterized by use of jargon, and not adjusted to the patient's needs. This study aims to try out whether a rather simple training session for doctors leads to an improvement in these respects, in a way that helps patients to better recall the information they received. Who can participate? Adults with MS who are currently on their first drug treatment and doctors working in the Neurological department of Akershus University Hospital who regularly meet MS patients. What does the study involve? All participating doctors receive a three hour training session in groups of 5-8. The training session involves a brief introduction followed by learning about how best to provide patients with information. The rest of the session involves role playing, reflecting on the content of the session and providing feedback, before a brief summary at the end. Patients are randomly allocated to one of two groups. Those in the first group meet with the doctor for a consultation before they have attended the training session and those in the second group meet with the doctor after they have attended the training session. For both groups, the consultations are videotaped so that they can be reviewed by the research team to assess the information provided in the session. Patients are also interviewed before and immediately after the consultation in order to find out how much information the doctor gave them they are able to remember. What are the possible benefits and risks of participating? Not provided at time of registration Where is the study run from? Akershus University Hospital (Norway) When is the study starting and how long is it expected to run for? April 2014 to December 2019 Who is funding the study? Norwegian Foundation for Health and Rehabilitation, ExtraStiftelsen (Norway) Who is the main contact? Professor Pål Gulbrandsen pal.gulbrandsen@medisin.uio.no