A new study finds that an online community of people registered with PatientsLikeMe™ is in some ways comparable to a patient population seen at a large MS center, and reports that a self-rating scale used by online participants may be useful in certain MS research investigations. Riley Bove, MD and Philip De Jager, MD, PhD (Brigham & Women’s Hospital and Harvard Medical School, Boston) and colleagues published their findings in PLOS ONE (2013;8:e59707). Dr. De Jager is a Harry Weaver Neuroscience Scholar of the National MS Society, and Dr. Bove is a recipient of the American Brain Foundation / National MS Society Clinician Scientist Grant (starting July 2013).
Background: PatientsLikeMe is a for-profit company that offers a community for people with MS and other disorders, allowing them to create a personal profile and track disease progression, and engage in live discussion forums with other members of the MS community. At this writing, the MS Forum has 34,046 members. The site has a research team that conducts internal analyses, and collaborates with external research teams (such as in the current study). All data from the site is self-reported by people with MS and other disorders and caregivers. The PatientsLikeMe team developed the MS Rating Scale (MSRS) based on participant questionnaires, with the goal of developing an outcome measure that is easy to complete and measures a range of reported problems that might change over time, such as vision, cognition, sexual function, and bladder function.
The Study: The Brigham & Women’s Hospital team selected people registered on PatientsLikeMe who reported a diagnosis of MS; were above the age of 18; provided at least 4 of the following personal characteristics: age, sex, disease type, age at first symptom, age at diagnosis; and had updated their profiles at least twice between 1/1/2009 and 8/31/2011. This total was 10,255 people. Demographic (age, race, ethnicity, gender, family history of MS, education) and disease (disease type, age at first symptoms, use of disease modifying therapy) information were obtained from the PatientsLikeMe databases.
This population was compared with all patients older than 18 and diagnosed with MS who were seen at the Partners MS Center at Brigham and Women's Hospital, Harvard Medical School, at least twice in the two years prior to the study. There were 4,039 patients included.
In comparing these two populations, the Harvard team found small but statistically significant differences. PatientsLikeMe members were on average younger, more educated, more often female, and less often white. Their disease course was more often relapsing-remitting, with younger age at symptom onset and shorter disease duration, and a family history of MS was less common. Similar proportions of both populations used glatiramer acetate, but more PatientsLikeMe members used interferon beta. Knowing about these differences in the two study populations is a first step toward being able to understand and use the online community as a resource for certain research questions.
To assess the validity of the PatientsLikeMe MSRS rating scale questionnaire, 121 participants aged 18 or older and diagnosed with MS, who were seen in November 2011 at the Partners MS Center, and their physicians completed this questionnaire. The scores reported by patients and their physicians correlated strongly with each other, and with measures actually done in person, such as the EDSS, a standard scale used to measure MS disease progression.
Finally, as a test case, the team used this study to investigate a possible MS risk factor, body mass index (BMI). Because the prevalence of obesity has increased dramatically in the past several decades, and obesity is associated with an increase in immune system activity, researchers have sought to determine if there is any association between obesity and disease severity or progression. The team did not find a strong link between being overweight or obese and having worse MS severity or progression.
Comment: The authors caution that online research poses ethical and other challenges, such as issues of privacy, data storage, and inconsistent data sampling schedules. However, if such issues can be resolved, they conclude that PatientsLikeMe members offer an “intriguing new platform” for MS research. For example, using answers to the questionnaire over time with this tool may allow researchers to determine whether increases in certain symptoms such as fatigue may be early warning signs for clinical attacks, or be useful for evaluating a person’s response to therapy.
Read more about connecting with the online MS community.