patient-reported outcomes

Tysabri (natalizumab) outperforms other disease-modifying therapies (DMTs) in its ability to lessen a range of patient-reported symptoms in people with multiple sclerosis (MS), according to data from a large real-world study. These symptoms include balance difficulties, sensory problems, feelings of anxiety, bladder problems, vision problems, and…

Perceptions of a medication can predict treatment adherence and persistence — sticking with the same therapy — in people with multiple sclerosis (MS), a prospective observational study found. The findings were the result of a clinical study (NCT02488343) evaluating the profile of adherence to therapy in patients ages…

Levels of neurofilament light (NfL), a protein marker of neuronal damage, appear to capture some aspects of patient‐perceived physical and functional abilities with multiple sclerosis (MS), as well as their utilization of select healthcare services, a real-world study suggests. Its researchers, however, stress that more work is needed before NfL levels…

Tysabri (natalizumab) is superior to other disease-modifying therapies (DMTs) at improving balance and vision, easing bladder problems and sexual dysfunction, and alleviating anxiety in people with multiple sclerosis (MS), according to data from an Australian study. The study’s findings were presented at…

Trials testing new immunotherapies for multiple sclerosis (MS) should focus more on patients’ experiences and on symptoms relevant for them such as fatigue, depression, and cognitive difficulties, a German working group recommends. According to the team, which is working on developing new standards for planning MS trials, clinical…

Processing speed is associated with the extent of brain and spinal cord injury in patients with multiple sclerosis (MS), according to a new study conducted in a clinical setting. The results support using the Processing Speed Test (PST) in both clinical practice and trials. The study, “…

Two groups working to collect and promote patient-reported outcomes (PROs) in research and treatment for multiple sclerosis (MS) announced they will jointly explore ways to “standardize and harmonize” these measures so as to make them more effective. The effort brings the iConquerMS People-Powered Research Network, managed by the nonprofit Accelerated Cure Project…

Patient questionnaires can be sensitive to signs of disease progression and worsening in neurological disorders like multiple sclerosis just as they are in other diseases, helping doctors to better predict clinical outcomes in patients, a study reports. Particularly, the study found that MS patients with higher scores on a specific disease questionnaire were nearly six times more likely to die within 10 years than those with lower scores, and that mortality risk also jumped among people whose scores rose on a second taking of same questionnaire. But the researchers cautioned that their study was not a tool for predicting mortality but a way to help patients be more active participants in their care. “Our research shows that by answering a set series of questions, patients can have an important role in predicting long-term prognosis in diseases like MS, and that these types of questionnaire should be used by doctors to get a better idea of the patient’s health,” Joel Raffel, study’s first author, from the Imperial College London, United Kingdom, said in a university news release written by Ryan O'Hare. “We hope that using patient-reported outcomes like these more and more will mean a shift towards empowering patients," he added. "They will be able to provide their own data, so rather than the doctor telling the patient how they are doing, it’s the other way around.” Among tools often used in the clinic are patient-reported outcomes; that is, questionnaires for patients that focus on their disease and treatment. But while these questionnaires have many uses, from screening for symptoms or evaluating treatment response to improving communications, they are often under-utilized when people have MS or other neurological diseases, "in part because it is not clear if PROs [patient-reported outcomes] relate to ‘hard clinical outcomes’ like disability or mortality," the team noted. Researchers wanted to determine whether the Multiple Sclerosis Impact Scale–29 (MSIS-29) — a 29-question survey assessing quality of life and disease impact over the previous two weeks — might serve as a way of predicting a patient's risk of death. The questionnaire was completed by 2,126 people, registered with the MS Society Tissue Bank in the U.K., beginning in 2004. Of these, 872 patients repeated it one year later. By 2014, the researchers reported that 264 of the original group of MS patients (12.4%) had died, and an evaluation revealed that MSIS-29 scores were associated with 10-year mortality risk regardless of age, gender, and disability score at the time the questionnaire was completed. Indeed, patients with high scores on the MSIS-29 questionnaire, indicative of a poor quality of life, were 5.7 times more likely to die within 10 years than those whose scores were lower. The mortality risk rose further among people whose MSIS-29 score worsened between the first and second year of answering the questionnaire. “Ideally, these questionnaires should be administered routinely, once a year in the clinic or online,” Raffel said. “This could help doctors to understand what issues the patients are facing and could also help to answer big research questions around prognosis and which of the available treatments we have for MS are working.” The team believes that questionnaire responses, together with usual clinical assessment tools like imaging data through MRI scans, could help doctors and patients choose the best course of treatment.

More relapsing multiple sclerosis (MS) patients treated with Zinbryta (daclizumab) said they felt its health benefits than did those given Avonex (interferon beta-1a) — demonstrating that patient-reported outcomes do mirror objective measures of improved health in a clinical trial of the two drugs. Patient-reported changes in both physical and psychological health contribute to a more comprehensive picture of…

Sanofi Genzyme presented positive results from its Phase 4 study into patient-reported assessments of Aubagio (teriflunomide), an approved oral treatment for relapsing forms of multiple sclerosis (RMS). Real-world patient responses were reported at the 32nd Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), recently held in London. The clinical…