A recently published study in the journal PLOS One reported a new tool to assess risk knowledge in multiple sclerosis (MS) patients. The study was conducted by an international team led by researchers at the University Medical Center Eppendorf in Hamburg, Germany, and is entitled “Risk Knowledge in Relapsing Multiple Sclerosis (RIKNO 1.0) – Development of an Outcome Instrument for Educational Interventions”.
MS is a chronic, progressive neurodegenerative autoimmune disorder that results from an attack to the central nervous system (brain, spinal cord, and optical nerves) by the body’s own immune system. The disorder leads to impairment in signal transmission along the nerve fibers, affecting motor function and causing irreversible neurological disability and paralysis.
MS patients need to be properly informed and understand the features and risks associated with their disease in order to make an informed decision, together with their physicians, concerning disease management. Therefore, risk knowledge and information are important factors for the involvement of the patient in healthcare decisions. However, there is no rigorously developed and validated assessment tool for risk knowledge in MS patients.
Researchers have previously shown that educational intervention in MS patients can improve their risk knowledge and the ability to perform risk calculation tasks. Now, researchers developed a new risk knowledge questionnaire aimed for relapsing-remitting MS (RRMS) patients called RIKNO 1.0, based on data from an education trial [Patient Education ProgrAmme on DIagnosis, Prognosis and early treatment of MS (PEPADIP) study] with 192 patients with early RRMS.
The RIKNO 1.0 questionnaire comprises 14 multiple-choice items selected based on patient feedback in terms of relevance and item difficulty, and 5 items based on the opinion of experts.
When testing their new tool, researchers found that approximately half of the 19 items were answered correctly. Interestingly, after patients underwent an educational intervention (four-hour education program and 57-page booklet), the team could detect a small but significant increase in the knowledge score. Nonetheless, on average, seven items were not answered properly, even after the intervention. The team believes that this might be linked to their particular difficult assessment by the patients. One example was questions on absolute risk reductions like relapse frequency, where only around 30% of the patients answered correctly.
The authors concluded that although RIKNO 1.0 might be a difficult questionnaire, it is a valuable tool to assess risk knowledge in RRMS patients. The team believes that risk knowledge by the patient is crucial for an informed discussion with physicians over available treatment options and a shared decision-making process, taking into account the physician’s medical opinion and the patient’s values and preferences. Interestingly, the team also reported that the questionnaire and focus group meetings based on it led to a health behavior change in patients, where some patients moved from a guilty feeling to being highly engaged and exhibiting a desire to explore and know more about treatment and healthcare options. The actual impact of these behavioral changes on health outcomes needs, however, to be determined.