In collaboration with The MOG Project, MyMyelitis created the Ignition Survey 2 to explore fatigue in MOG Antibody Disease (MOGAD) within the community. Below are the complete findings of the survey.
What was the Goal of the Survey?
The survey was designed based on what we saw regarding the fatigue experienced by MOGAD patients in the community. This survey aims to inspire more research on MOG Antibody Disease.
We wanted to explore if patients who have MOGAD experienced more fatigue than the members of their household who don't have MOGAD. We aim to highlight areas of importance to healthcare professionals using community surveys such as this one. They can then conduct formal studies on a bigger scale with more resources.
Research has examined fatigue in conditions similar to MOGAD, such as Multiple Sclerosis and Neuromyelitis Optica Spectrum Disorder. But this is the first time research has looked into the relationship between fatigue and MOG Antibody Disease.
Demographics of Survey Respondents
The respondents to the survey were 187 MOG-positive patients, including 21 pediatrics and 166 adults, and 62 members of their household who don't have MOGAD. This survey was an online global cross-sectional survey involving females and males from various ethnic backgrounds. As you can see, most respondents are from the USA and have a White/Caucasian ethnic background.
Diagnosis of Respondents
The survey asked two questions to respondents relating to their diagnosis of MOG Antibody Disease. The first asked how long they thought they had had MOGAD, and the second asked how long they had been diagnosed with it.
For the first question, one in four respondents answered that they believed they had had MOGAD for 1-2 years before diagnosis. 22% of respondents thought they had had the disease for 3-5 years before being diagnosed.
1-2 Years of official diagnosis (35%) was the most popular response to the second question. Other popular answers were <1 year, with 32% of respondents and 23% responding with 3-4 years.
Other Diagnosis of Respondents
37% of participants diagnosed with MOGAD were also diagnosed with 'Low Vitamin D <50' compared to 26% of household members without MOGAD. High Blood Pressure was another common diagnosis found in 17% of MOGAD-diagnosed participants and 15% of household members without MOGAD.
Notably, those diagnosed with MOG Antibody Disease were over twice as likely (15%) compared to household members without MOGAD (6%) to have been diagnosed with Other Autoimmune Diseases. 30% of MOGAD patients and 37% of household members without MOGAD have not been diagnosed with any other medical conditions.
MOGAD Presentations of Respondents
28% of Pediatrics under the age of 18 Years old who are diagnosed with MOGAD experienced Acute Disseminated Encephalomyelitis (ADEM) at some point in their disease. Next was Bilateral optic neuritis in 20%. In Adults over 18 years old, the most common phenotype was bilateral and unilateral optic neuritis making up almost 50% of adult presentations. Other typical central nervous system involvements include transverse myelitis, autoimmune encephalitis, and brainstem involvement.
Signs and Symptoms of Respondents
One survey question asked respondents what the main signs and symptoms they experienced were. The most common symptom experienced by MOGAD patients were 'Headaches' (74%), 'Problems thinking, remembering, or concentrating' (73%). Whereas for household members without MOGAD, the most common symptoms were 'Muscle and joint pain' (59%) and 'Sleep problems such as insomnia' (52%).
Treatments of Respondents
Participants' treatment responses were divided into three categories, the first being individuals who were not on any treatment. The other two are those who were taking acute treatment and those who were taking preventative therapies.
The most popular acute treatments amongst participants were IVIG, Oral Prednisone, and IV Steroids. Participants taking preventative therapy included 50/187 taking Rituximab, 43 on IVIG with 36 not taking any treatment.
In their opinion, 82% of those diagnosed with MOGAD felt often fatigued, with 131 being on preventative treatment.
Modified Fatigue Impact Scale
Fatigue is a lack of physical or mental energy perceived by the individual with usual activities. The Modified Fatigue Impact Scale, also known as (MFIS) is a set of 21 questions completed by the respondents. It consists of three subcategories, physical, cognitive, and psycho-social, with each question scoring 0-4. The minimum score is 0, and the maximum overall score is 84, which is associated with more severe fatigue.
We decided to look at the categorized age groups and overall Median MFIS scores of pediatrics, adult men, and women with MOG Antibody disease. Then compare them to members of their households who don't have MOGAD. We identified that Adult females with MOGAD had a Median MFIS score of 51.5, suffering a substantial amount of fatigue. Adult Men with MOGAD with a Median MFIS score of 50, similar to adult females.
Pediatrics diagnosed with MOG Antibody disease had a low MEDIAN MFIS score of 36, equivalent to the same MEDIAN MFIS score of adult females who don't have MOGAD. The results suggest that adult men and women with MOG Antibody disease will likely experience more fatigue overall than pediatrics with MOGAD and adults without MOGAD.
Fatigue Experiences in Respondents
The definition of fatigue is physical and or mental exhaustion. Participants diagnosed with MOG Antibody Disease were asked what types of fatigue they experienced.
MOG-positive pediatric respondents experienced 'Emotional Fatigue' (67%) and 'Physical Fatigue' (62%) the most. In MOG-positive adult respondents, Physical Fatigue (86%) was the most common fatigue, followed by 'Mental Fatigue' (70%).
Current Fatigue Outcomes vs. Treatment in MOGAD Respondents
82% of MOG-positive patients reported 'currently feel fatigued or tired often,' and 13% said that they "have not felt fatigued currently, but have in the past. Only 5% said they 'do not currently feel fatigued often and have not in the past.'
When comparing participants' responses to their current treatment status, those taking a preventative treatment were more likely to be 'fatigued and tired often' (85%). In comparison, 14% were 'Fatigued and tired often' but not taking any treatment.
52% of respondents taking a preventative treatment 'do not currently feel fatigued often but have in the past, compared to 21% of those taking an acute treatment. However, 50% of respondents taking a preventative treatment 'do not currently feel fatigued often and have not in the past.'
Fatigue and MOGAD Relapses/Pseudo-Relapses
The definition of a pseudo-relapse in MOGAD is 'the recurrence of neurological symptoms which tends to improve over 24-48 hours. An exacerbating factor or trigger, such as heat, stress, or sickness, often causes pseudo-relapses.
31% of MOGAD-positive respondents felt that their fatigue was 'sometimes' related to a pseudo-relapse. 25% of those diagnosed with MOGAD believe that pseudo-relapses were 'often' associated with their fatigue.
A MOGAD relapse is 'new or worsening central nervous system symptoms that worsen over more than 24 hours. 31% of MOGAD-positive pediatric respondents felt that their fatigue was 'sometimes' related to relapses compared to 29% of MOG-positive adults. 25% of MOGAD pediatrics and 42% of MOGAD adults were unsure if their fatigue was related to relapses.
Fatigue and Medications
40% of MOG-positive pediatric respondents believed their fatigue is 'utterly related to the condition and not the treatment they are taking. One in 3 MOGAD diagnosed pediatrics thinks their fatigue is 'Not related at all to their MOGAD treatments.
Similarly, 36% of MOG-positive adults believed their fatigue was 'utterly related to the condition and not their treatment. 31% of MOGAD adult respondents think their fatigue is 'Not related at all to their MOGAD treatments.
Sleeping Patterns and Sleep Difficulties
When we looked at the data for sleep patterns and difficulties, 32% of adults who have MOGAD had trouble sleeping nearly every night. 25% had difficulty sleeping often, which made up a total of 57% who had trouble sleeping most of the time. In comparison, 26% of their household members who don't have MOGAD had trouble sleeping often, and 46% had difficulty sometimes.
Pediatric respondents with MOG did not seem to have this problem, as 75% of children who have MOGAD reported rarely or never having any trouble sleeping.
When comparing the average amount of sleep respondents got each night, MOG-positive pediatrics had favorable outcomes sleeping for more than 7 hours. In contrast, MOG-positive adults were likely to have interrupted sleep, averaging below 6 hours every night. On average, members of their households who don't have MOGAD also slept for less than 6 hours.
MOG-positive pediatrics also tended to wake up 0-1 times during the night, whereas MOG-positive adults averaged waking up at least 2-3 times during the night. Members of their household who don't have MOGAD only woke up once or twice during the night.
According to this table, the results of the Ignition survey 2: Fatigue in MOGAD, which includes the overall total MFIS score analysis for both MOG-positive respondents and their household members who don't have MOGAD, as well as the previous interpretation of sleep difficulties, treatment, and other categories are suggestive that fatigue does exist in patients who have MOG Antibody disease, compared to their household members who don't have MOGAD. The findings should warrant further investigations and research into this autoimmune disorder.
Use of the Survey Results in MOGAD Research
The survey results immediately sparked research before and after the release of the results of this survey. We are excited to announce that Dr. Dimitrios Ladakis, Dr. Elias Sitorchos, Dr. Bardia Nourbakhsh, and others from John Hopkins School of Medicine, together with other MOG Project members, which include Jenny Khazen, Jennifer Gould, Julia Lefelar, Rebecca Salky, and Chuck Bies who contributed to the research article 'Fatigue is a common symptom in myelin oligodendrocyte glycoprotein antibody disease.' This article was presented at ECTRIMS in Amsterdam on the 26th of October by Dr. Ladakis and Julia Lefelar.
The Multiple Sclerosis Journal: Experimental, Translational, and Clinical published the article on the 15th of November, 2022. You can read the full article here.