patient-reported outcomes

NfL Mirrors Some Life Quality Aspects Felt by Patients, More Work Needed

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

MS Groups Working to Advance Patient-Reported Outcomes in Research, Patient Care and Treatment Development

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

Health Questionnaires Can Help to Predict ‘Hard Outcomes’ Like Survival in MS Patients, Study Says

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. ā€œOur 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 patientā€™s health,ā€ Joel Raffel, studyā€™s first author, from the Imperial College London, United Kingdom, said in a university news release written by Ryan O'Hare. ā€œWe 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, itā€™s the other way around.ā€ 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 ā€˜hard clinical outcomesā€™ like disability or mortality," the team noted. Researchers wanted to determine whether the Multiple Sclerosis Impact Scaleā€“29 (MSIS-29) ā€” a 29-question survey assessing quality of life and disease impact over the previous two weeks ā€” 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. ā€œIdeally, these questionnaires should be administered routinely, once a year in the clinic or online,ā€ Raffel said. ā€œThis 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.ā€ 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.

Patient Opinions on Zinbryta Seen to Match Phase 3 Trial Data, Supporting Questionnaire Use

More relapsing multiple sclerosis (MS) patients treated withĀ Zinbryta (daclizumab)Ā said they feltĀ itsĀ health benefitsĀ than did thoseĀ givenĀ Avonex (interferon beta-1a) ā€” demonstrating that patient-reported outcomes do mirror objective measures of improved health in a clinical trial ofĀ the two drugs. Patient-reported changesĀ in both physical and psychological health contribute to a more comprehensive picture of…

#ECTRIMS2016 – Sanofi Releases Patients’ Views of Aubagio as Effective Treatment for Relapsing MS

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