The Patient Experience of Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease Post-Diagnosis: Results from an International Survey

Abstract

Introduction

Data on the post-diagnosis experience of individuals with myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) and their caregivers are limited. We explored post-diagnosis treatment experience and satisfaction with care in individuals with MOGAD and associated caregiver burden.

Methods

An online 57-question survey was distributed internationally to adults (aged ≥ 16 years) or caregivers assisting an adult or answering on behalf of a child (aged < 16 years) from October to December 2024.

Results

Overall, 261 responses were collected (adults, 219; children, 42) across 27 countries. Of those prescribed a preventative treatment, 43% of adults (n = 71/167) and 42% of children (n = 13/31) stopped treatment; common reasons were side effects and lack of efficacy. Most adults (73%) and children (64%) reported difficulties accessing/trying to access MOGAD treatment and care. Substantial dissatisfaction was reported for chronic symptom management for adults (35%) and psychological/emotional support for children (31%). Compared with individuals with MOGAD (N = 261), caregivers (of adults, n = 61; of children, n = 42) were significantly more likely to report mental health impacts (26% vs 92%, respectively; p < 0.001).

Conclusion

Persistent unmet care and support needs exist for individuals with MOGAD. Treatments were often stopped/changed, highlighting the need for more efficacious, tolerable, and approved therapies. Caregivers experience significant mental health impacts; improved support is needed.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1007/s40120-026-01010-1.

Plain Language Summary

Only a few studies have described what life is like for people with myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) and their caregivers. This study looked at how people with MOGAD were impacted by their disease, their experiences with treatments, and how satisfied they were with the care they had received. It also looked at how caregivers of people with MOGAD were affected. We sent a 57-question survey to adults with MOGAD (who were aged 16 years and older), caregivers of adults with MOGAD, and caregivers of children with MOGAD (who were aged under 16 years). In total, 261 people from 27 countries completed the survey, including 219 adults and 42 caregivers answering for children. We found that many people with MOGAD stop their long-term (preventative) treatment, often because of side effects or the treatment not working well. The majority of people said that it was difficult to access the treatment and care they needed for MOGAD. Around a third of people who were receiving financial support for MOGAD were also dissatisfied with this support. Adults were often dissatisfied with how their symptoms were managed, and the psychological/emotional support available for children was often said to be dissatisfying. We also compared the mental health impact of MOGAD between people who had the disease and people who cared for them and found that caregivers are more likely to report mental health challenges. Overall, there are still big gaps in treatment and support, and better therapies and caregiver support are urgently needed.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1007/s40120-026-01010-1.

Key Summary Points

Why carry out this study?

To date, limited research has explored the post-diagnosis experience of individuals with MOGAD or the burden faced by their caregivers, leaving important knowledge gaps around treatment satisfaction, access to care, and ongoing symptom impact.

Despite MOGAD diagnostic criteria being published in 2023, people with MOGAD continue to report delays in diagnosis, unmet needs related to symptom management, and challenges navigating support services.

This study sought to understand the post-diagnosis treatment experience and satisfaction with care among individuals with MOGAD, and the associated caregiver burden.

What was learned from the study?

A substantial proportion of adults (35%) were dissatisfied with chronic symptom management, and many participants had stopped or changed preventative treatment due to side effects or lack of efficacy. Caregivers were significantly more likely than patients to report mental health impacts (92% vs 26%).

Persistent unmet needs exist across diagnosis, treatment, and support services for people with MOGAD, underscoring the need for more effective and tolerable therapies.

Enhanced patient–clinician communication, improved awareness of available support services, and better caregiver support are essential to reduce disease burden and improve long-term outcomes.

Introduction

Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare, inflammatory demyelinating central nervous system disease, for which the first diagnostic criteria were published in 2023 [1]. The annual incidence and prevalence of MOGAD are estimated to be 3.4–4.8 people per million and 1.3–2.5 per 100,000, respectively [2]. Increased disease awareness and use of MOG antibody assays will likely increase the number of people identified as having MOGAD [2, 3].

MOGAD is distinct from diseases such as neuromyelitis optica spectrum disorder (NMOSD) and multiple sclerosis (MS), although symptomatic overlap can make diagnosis of MOGAD challenging in both adult and pediatric populations [4]. Clinical features of MOGAD often include optic neuritis (ON), transverse myelitis, and acute disseminated encephalomyelitis (ADEM) or brain lesions [1], although these can differ between adult and pediatric populations [5–8]. Diagnostic trajectory, relapse pattern, treatment decision-making, dependency on caregivers, and support needs also differ between adults and children with MOGAD [6, 8].

To date, limited studies have investigated MOGAD from the patient perspective and disease burden has not been well researched. Previously, authors from this group distributed a survey to 204 patients and their caregivers, and reported that diagnosis of MOGAD is often delayed, affecting patients’ physical health and quality of life (QoL) [9]. Additional survey/interview studies have highlighted the underappreciated burden of MOGAD and reported impacts across health-related QoL (HRQoL) domains [10–12]. Research into the caregiver burden of MOGAD is also limited.

This study was designed to address these knowledge gaps by exploring post-diagnosis treatment experience and satisfaction with care in individuals with MOGAD, and the associated caregiver burden.

Methods

Survey Development

The survey was co-created by neurologists, The MOG Project, the Siegel Rare Neuroimmune Association (SRNA), and UCB. The MOG Project and the SRNA are patient advocacy organizations that provide education and support for individuals with MOGAD and related rare neuroimmune disorders, as well as their caregivers and families.

The survey was not designed as a formally psychometrically validated instrument. Rather, content validity was supported by iterative development involving neurologists with MOGAD expertise, patient advocacy organizations, industry partners, literature review insights, behavioral science models, validated scales where applicable, and patient advocacy group workshops. Survey items were reviewed for clarity, relevance, acceptability, and coverage of key domains including diagnostic experience, treatment access, treatment satisfaction, chronic symptoms, support service utilization, and caregiver impact.

The final survey included 57 questions (multiple-choice, multiple-response, and free-text) and took approximately 30 min to complete; no questions were compulsory (full survey in the Supplement). The survey was distributed from October to December 2024 via the social media platforms of The MOG Project and the SRNA; to increase international reach, the survey was made available in English, French, and Spanish. Responses were collected using QuestionPro.

Ethical Approval

This study was approved by the institutional review board of the Children’s Hospital Los Angeles and the University of Southern California (reference number CHLA-21-01922). The study was conducted in accordance with the 1964 Declaration of Helsinki and its later amendments. All participants gave informed consent, including consent for their anonymized, aggregated data to be shared as research findings.

Participants

Survey participants were individuals with MOGAD aged ≥ 16 years old (‘adults’), or caregivers either assisting an adult (aged ≥ 16 years; included in the ‘adults’ group) to complete the survey or answering on behalf of a pediatric patient (aged < 16 years; ‘children’). Throughout this paper, ‘participants’ refers to people with MOGAD (adults or children), even if the information was provided by a caregiver answering on their behalf. Some questions asked caregivers to provide information about their own experience; the term ‘caregivers’ is used when referring to these responses. Clinician confirmation of MOGAD diagnosis was not collected as the survey was anonymous and distributed internationally through patient advocacy organizations rather than through treating clinicians or a clinical registry.

Statistical Analysis

Anonymized data were cleaned and analyzed using IBM SPSS Statistics version 29 and SAS. Adult and pediatric populations were analyzed separately. Conventional content and thematic analyses were used to analyze free-text responses. Exploratory subgroup analyses were conducted to (1) compare the post-diagnosis experience of patients diagnosed before and after the 2023 MOGAD diagnostic criteria [1] were published, and (2) to investigate the mental health burden on patients and their caregivers. Pre- and post-2023 diagnostic criteria analyses were primarily descriptive and were interpreted cautiously due to optional item-level responses and small subgroup sizes, particularly among children.

Results

Participants

In total, 261 responses were received from 219 adults (84%) and 42 caregivers (41 parents, 1 non-parent) on behalf of children (16%) across 27 countries. Most participants were female (adults: n = 172/219, 79%; children: n = 26/42, 62%), and approximately half were from the USA (adults: n = 124/219, 57%; children: n = 21/42, 50%) (Table 1). Most had received a confirmed MOGAD diagnosis since 2020, and approximately 50% since 2023 (when the diagnostic criteria were published [1]); mean time from first symptoms to diagnosis was 4.1 years for adults and 0.5 years for children (Table 2).

Table 1.

Demographic characteristics

Characteristic	Adults	Children
	n (%)	n (%)
Age range	n = 219	n = 42
0–9	–	21 (50)
10–15	–	21 (50)
16–17	4 (2)	–
18–29	22 (10)	–
30–39	57 (26)	–
40–49	47 (22)	–
50–59	46 (21)	–
60–69	33 (15)	–
70+	10 (5)	–
Gender	n = 219	n = 42
Male	42 (19)	16 (38)
Female	172 (79)	26 (62)
Nonbinary or other	5 (2)	0 (0)
Ethnic group	n = 219	n = 42
White	187 (85)	37 (88)
Hispanic/Latino	20 (9)	5 (12)
Asian	9 (4)	2 (5)
Arab	5 (2)	0 (0)
Black, Caribbean, or African	5 (2)	3 (7)
Other ethnic group	5 (2)	3 (7)
Native American	3 (1)	2 (5)
Region of residence	n = 218	n = 42
USA	124 (57)	21 (50)
Europe	58 (27)	15 (36)
Rest of the world	36 (17)	6 (14)
Geographic location	n = 219	n = 42
Urban	74 (34)	10 (24)
Suburban	97 (44)	14 (33)
Rural	48 (22)	18 (43)
Living situation	n = 219	n = 42
Live alone	41 (19)	0 (0)
Live with partner/spouse	141 (64)	0 (0)
Live with parents	20 (9)	40 (95)
Live with extended family members	9 (4)	0 (0)
Live with friends	3 (1)	0 (0)
Live with other people I don’t know well	1 (1)	0 (0)
Live with other adult responsible for care	3 (1)	1 (2)
Live with caregiver	1 (1)	0 (0)
Other	0 (0)	1 (2)
Highest level of educationa	n = 219	n = 42
High school or equivalent	47 (22)	8 (19)a
Trade school	17 (8)	2 (5)a
Higher education	147 (67)	28 (67)a
No formal education	–	2 (5)a
Other	8 (4)	2 (5)a
Work statusa	n = 219	n = 42
Full-time employed	84 (38)	18 (43)a
Part-time employed	23 (11)	8 (19)a
Self-employed	15 (7)	1 (2)a
Unemployed	7 (3)	1 (2)a
Homemaker	7 (3)	8 (19)a
Student	12 (5)	2 (5)a
Retired	26 (12)	–
Not able to work due to disability	40 (18)	3 (7)a
Other	5 (2)	1 (2)a
Medical insurance coveragea	n = 219	n = 42
Fully covered	131 (60)	24 (57)a
Partially covered	14 (6)	3 (7)a
No insurance coverage	10 (5)	1 (2)a
Covered by a national health service	64 (29)	14 (33)a
Comorbiditiesb	n = 219	n = 42
Mental health disorder	63 (29)	4 (10)
Other	54 (25)	9 (21)
Migraine	51 (23)	2 (5)
Vitamin D deficiency	50 (23)	5 (12)
No other health issues	50 (23)	20 (48)
Obesity	46 (21)	2 (5)
Asthma	39 (18)	5 (12)
Hypertension	39 (18)	1 (2)
Sleep disorder	26 (12)	3 (7)
Hypothyroidism	23 (11)	1 (2)
Diabetes	19 (9)	0 (0)
Anemia	17 (8)	0 (0)
Obstructive sleep apnea	18 (8)	0 (0)
Gastrointestinal disease	17 (8)	2 (5)
Heart rhythm problems	12 (5)	0 (0)
Connective tissue disorder	10 (5)	0 (0)

^aOf caregivers for children

^b≥ 5% incidence in adults. Comorbidity categories were collected using predefined survey response options and were not mutually exclusive; participants could select more than one category

Table 2.

Clinical characteristics

Characteristic	Adults	Children
Year of diagnosis, n (%)	n = 219	n = 42
2024	50 (23)	11 (26)
2023	63 (29)	14 (33)
2022	29 (13)	7 (17)
2021	18 (8)	2 (5)
2020	23 (11)	4 (10)
2019	18 (8)	3 (7)
2018	9 (4)	0 (0)
2017	5 (2)	0 (0)
2016 or earlier	4 (2)	1 (2)
Mean time from first symptoms to diagnosis, years	n = 219	n = 42
	4.1	0.5
Type of MOGAD, n (%)	n = 219	n = 42
Monophasic	24 (11)	3 (7)
Relapsing	124 (57)	22 (52)
Don’t know	71 (32)	17 (41)
Satisfaction with overall health, n (%)	n = 219	n = 40
Very satisfied	15 (7)	4 (10)
Satisfied	61 (28)	16 (40)
Neither satisfied nor dissatisfied	64 (29)	12 (30)
Dissatisfied	62 (28)	5 (13)
Very dissatisfied	17 (8)	3 (8)
Missing	–	2
Attack phenotypes experienced, n (%)	n = 219	n = 42
ON	173 (79)	31 (74)
Transverse myelitis	85 (39)	11 (26)
ADEM or brain/brainstem attack	37 (17)	24 (57)
Other	26 (12)	4 (10)
Autoimmune encephalitis	23 (11)	10 (24)
Don’t know	8 (4)	1 (2)
Frequency of HCP visits for MOGAD (excluding emergency appointments), n (%)	n = 219	n = 42
Every 3–6 months	162 (74)	34 (81)
Once a year	47 (22)	5 (12)
Every 2 years	1 (1)	0 (0)
Sporadic/only when experiencing a relapse	4 (2)	3 (7)
No follow-up scheduled	5 (2)	0 (0)

ADEM acute disseminated encephalomyelitis; HCP healthcare practitioner; MOGAD myelin oligodendrocyte glycoprotein antibody-associated disease; ON optic neuritis

Among adults, the most common comorbidity was mental health disorder (n = 63/219, 29%); in children, ‘no other health issues’ was most commonly selected (n = 20/42, 48%), followed by ‘other’ (n = 9/42, 21%) (Table 1). Most participants had relapsing MOGAD (referred to as “relapsing/multiphasic MOGAD” in the survey question); many had experienced ≥ 2 relapses since diagnosis (adults: n = 68/113, 60%; children: n = 13/20, 65%), with 23% of adults (n = 28/124) and 18% of children (n = 4/22) having experienced ≥ 5 (Fig. 1). ON was the most common attack phenotype for both adults (n = 173/219, 79%) and children (n = 31/42, 74%). ADEM or brain/brainstem attack was more prominent in children (n = 24/42, 57%) than in adults (n = 37/219, 17%) (Table 2). Additional demographic and clinical characteristics are reported in Tables 1 and 2.

Fig. 1.

Participant flow diagram. All survey questions were optional. Data were not collected on whether participants who were prescribed preventative treatment but had since stopped taking it had switched to a different treatment or stopped taking treatment entirely; long-term treatment may not have been required. MOGAD myelin oligodendrocyte glycoprotein antibody-associated disease

Symptom Burden

Vision loss/eye pain was the most impactful MOGAD symptom experienced by adults (n = 87/171, 51%) and children (n = 18/30, 60%) (Fig. 2). During attacks, adults and children were more likely to experience all surveyed symptoms to a severe degree compared with between attacks (Supplementary Fig. 1a–d). The largest numerical increases in symptom severity were seen in adults for changes in vision, eye pain, and headaches, and in children for changes in vision, headaches, and fatigue. Although less severe than during attacks, participants also experienced symptoms between attacks, with fatigue, weakness/physical tiredness, and changes in vision being the top three symptoms in adults and children (based on a combined percentage of moderate and severe symptoms) (Supplementary Fig. 1c, d).

Fig. 2.

Most impactful symptoms. All survey questions were optional

Most adults had been hospitalized due to MOGAD (Supplementary Fig. 2a), with 9% (n = 20/219) hospitalized ≥ 5 times since diagnosis (Supplementary Fig. 2b). Nearly all children (n = 41/42, 98%) had been hospitalized due to MOGAD (Supplementary Fig. 2c), with approximately a fifth hospitalized ≥ 5 times (Supplementary Fig. 2d).

Treatment Access and Decision-Making

Most participants reported difficulties accessing/trying to access MOGAD and care; the most common difficulty was delayed diagnosis/misdiagnosis (adults: n = 86/219, 39%; children: n = 14/42, 33%; Fig. 3). There was a numerically lower frequency of reported access difficulties among participants diagnosed after publication of the 2023 diagnostic criteria [1], although participants still reported difficulties accessing care (adults with no difficulties: 24.5% pre-publication vs 30.1% post-publication; children with no difficulties: 29.4% pre-publication vs 40.0% post-publication); however, these exploratory subgroup findings should be interpreted cautiously. Most adults (n = 178/219, 81%) and children (n = 35/42, 83%) either mostly or completely trusted their healthcare team to manage their MOGAD effectively.

Fig. 3.

Difficulties experienced when accessing/trying to access care. a Adults (n = 219), b Children (n = 42). All survey questions were optional. MOGAD myelin oligodendrocyte glycoprotein antibody-associated disease

Participants wanted to be included in treatment decision-making, with 92% of adults (n = 201/219) always wanting to be involved. In practice, 70% of adults (n = 154/219) felt always involved, with 15% (n = 32/219) often involved. Only around half of adults (n = 111/219, 51%) felt their wishes were completely considered when treatment decisions were made.

Preventative Treatment Experience

Of 219 adults, 52 (24%) had never been prescribed a preventative medication (n = 26/52, 50% were newly diagnosed; n = 26/52, 50% were on ‘watch and wait’). Similarly for children, 26% (n = 11/42) had never been prescribed preventative treatment (n = 4/11, 36% were newly diagnosed; n = 7/11, 64% were on ‘watch and wait’) (Table 3). Of the remaining participants who had been prescribed preventative treatment (adults: n = 167/219, 76%; children: n = 31/42, 74%), 57% of adults (n = 96/167) and 58% of children (n = 18/31) were taking the medication originally prescribed, whereas 43% of adults (n = 71/167) and 42% of children (n = 13/31) had been prescribed treatment but had since stopped taking it (data not collected on whether participants switched treatments or stopped entirely; long-term treatment may not have been required) (Table 3, Fig. 1).

Table 3.

Treatment experience

Characteristic	Adults	Children
	n (%)	n (%)
Longest period stable on preventative treatment without relapse	n = 166	n = 31
Less than 1 year	42 (25)	10 (32)
Between 1 and 2 years	36 (21)	10 (32)
Between 2 and 3 years	20 (12)	1 (3)
More than 3 years	28 (17)	2 (7)
No relapse has occurred	40 (24)	8 (26)
Missing	53	11
Satisfaction with taking current treatment	n = 160	n = 28
Very satisfied/very good	33 (21)	6 (21)
Satisfied/good	67 (42)	13 (46)
Neutral/neither good nor poor	38 (24)	8 (29)
Unsatisfied/poor	12 (8)	0 (0)
Very unsatisfied/very poor	10 (6)	1 (4)
Missing	59	14
Treatment status	n = 219	n = 42
Not on preventative treatment	52/219 (24)	11/42 (26)
Never been prescribed preventative medication before as newly diagnosed	26/52 (50)	4/11 (36)
Never been prescribed preventative medication as on ‘watch and wait’	26/52 (50)	7/11 (64)
On preventative treatment	167/219 (76)	31/42 (74)
On the same medication originally prescribed	96/167 (57)	18/31 (58)
Prescribed preventative treatment but have since stopped taking	71/167 (43)	13/31 (42)

Approximately a quarter of adults (n = 42/166, 25%) and a third of children (n = 10/31, 32%) who were taking preventative treatment had a longest stable period without relapse of less than 1 year, whereas approximately a quarter of both adults (n = 40/166, 24%) and children (n = 8/31, 26%) had not yet experienced a relapse while receiving preventative treatment (Table 3).

Participants were asked to select which preventative treatments they were currently taking (it was possible to select multiple); 191 treatments were selected by the 159 adults who responded. The most common current treatment was intravenous immunoglobulin (IVIg; n = 54/191, 28%), followed by B cell-depleting therapy (n = 39/191, 20%). For children, 28 participants responded and selected 36 current treatments; the most common were IVIg (n = 21/36, 58%) and prednisone (n = 5/36, 14%) (Supplementary Fig. 3a, b). Most adults (63%) were very satisfied/satisfied with their current preventative treatment, whereas 38% were neutral/unsatisfied/very unsatisfied. Current treatment was reported as very good/good for most children (68%) (Table 3).

Among adults and children, it was most common that the patient’s neuroimmunologist/neurologist expert in MS or MOGAD made the decision to switch to their current treatment (adults: n = 43/71, 61%; children: n = 9/12, 75%). Only 7% of adults (n = 5/71) reported that it was their own decision. The most common reason for participants’ most recent switch was relapse (adults: n = 26/70, 37%; children: n = 6/11, 55%).

The most common previous preventative treatment was oral prednisone for adults (68 participants reporting 120 treatments; n = 36/120, 30%) and children (13 participants reporting 22 treatments; n = 6/22, 27%) (Supplementary Fig. 3a, b). Reasons given for previous treatments being ranked as poor/very poor included “it caused side effects (had a bad reaction)” and “it was ineffective (relapsed)”; reasons given for previous treatments being ranked as good/very good included “it was effective at managing symptoms”, “it had relatively few/no side effects for me”, and “it was easy to take” (Fig. 4). In general, severe symptoms were reported in a low proportion of adults (1–29%) and children (0–11%) after starting preventative treatment; however, some continued to experience severe fatigue and weakness/physical tiredness. Most symptoms were still experienced to some degree by at least a third of participants (Supplementary Fig. 4a, b).

Fig. 4.

Reasons for ratings of the overall experience of previous preventative treatment. a Adults (n = 68). b Children (n = 13). All survey questions were optional

Treatment Goals

Among adults (n = 165), the top three treatment goals in order of importance were to reduce the frequency of relapse, reduce the severity of relapse, and prevent long-term disability. Among children (n = 31), these were to reduce the severity of relapse, reduce the frequency of relapse, and prevent long-term disability. Participants were also asked to specify what their single most important treatment goal was; among adults and children, this was to prevent relapse (n = 59/124, 48% and n = 14/23, 61%, respectively). Free-text responses reinforced the importance of avoiding relapse and staying stable, preventing long-term disability, and improving QoL/returning to ‘normal’.

Satisfaction with Care and Support Services

In total, 70% of adults (n = 152/217) and 83% of children (n = 34/41) were reported to be satisfied/very satisfied with their treatment management; however, 35% of adults (n = 71/202) were dissatisfied/very dissatisfied with their chronic symptom management (Supplementary Fig. 5a, b). Satisfaction with treatment management and chronic symptom management was similar regardless of diagnosis pre- or post-publication of the 2023 diagnostic criteria [1] (Supplementary Fig. 6).

Most participants were not satisfied with the psychological/emotional, practical, or financial support services received for MOGAD (Supplementary Fig. 7a, b). Open communication with family, friends, and caregivers was the emotional support most often utilized by adults (n = 139/217, 64%) and children (n = 32/40, 80%); most other services were used infrequently (Supplementary Fig. 8a, b). Among adults and children, there was low awareness of available financial support services, and a substantial proportion were not using these services as they deemed them unnecessary. Support for prescription medication costs was the financial support service most often utilized and found helpful by adults (n = 82/214, 38%) and children (n = 13/41, 32%) (Supplementary Fig. 8c, d). There was limited utilization of practical support services (which included medication delivery and personal care assistance); most participants were either unaware of the services/not offered them, or felt that they were unnecessary (Supplementary Fig. 8e, f). Online forums were the social support service most often used by adults (n = 133/217, 61%) and children and their caregivers (n = 26/41, 63%); many participants felt that other social support services were unnecessary or were unaware of them (Supplementary Fig. 8g, h). Free-text responses regarding the type of support that participants felt had been most helpful to their recovery highlighted the range of services being utilized, although adult participants placed particular emphasis on the usefulness of support groups, patient advocacy groups, online information, and friends and family.

Caregiver Burden

Approximately half (n = 112/219, 51%) of adults reported not having a caregiver; 37% (n = 82/219) were cared for by their spouse/partner, and 8% (n = 18/219) by another family member. Children were almost always cared for by a parent (n = 41/42, 98%), with one having a professional caregiver (n = 1/42, 2%).

There was substantial burden on caregivers of adults across different aspects of life, particularly family life (Fig. 5a). Mental health and day-to-day emotions were at least somewhat impacted for all caregivers of children (Fig. 5b). Caregivers of children reported significantly greater impact on aspects of daily living than caregivers of adults, including day-to-day emotions, family life, work, and social life (all p < 0.05) (Supplementary Fig. 9). Compared with individuals with MOGAD (N = 261), caregivers (of adults, n = 61; of children, n = 42) were significantly more likely to report mental health impacts (26% vs 92%, respectively; p < 0.001) (Supplementary Fig. 10).

Fig. 5.

Impact of caregiving on aspects of life. a Adults. b Children. All survey questions were optional. n numbers are displayed only for cells above 10%

Discussion

To our knowledge, this is the largest patient survey to investigate MOGAD burden, providing important insights from patients and caregivers. Most participants had experienced relapses and been hospitalized, encountered difficulties when trying to access care and treatment, and underutilized support services. Patient demographic and disease profiles, therapeutic interventions, and the disability status of individuals surveyed matched those previously reported in the literature for both adults and children [13, 14].

The survey responses characterize the unmet needs related to symptom management. Despite preventative treatment, participants reported that symptoms persist between attacks (particularly fatigue and weakness/physical tiredness). Around one-third of adults were dissatisfied with their chronic symptom management. Moreover, despite preventative treatment, participants continued to relapse and be hospitalized. Approximately a quarter of adults and a third of children reported their longest stable period on preventative treatment without relapse as being < 1 year. Previous treatments were often ranked as poor/very poor due to side effects and lack of efficacy, resulting in relapse; despite this, most participants who were taking a preventative treatment were currently satisfied. This finding likely reflects the distinction between prior and current treatment experience. Participants may have discontinued earlier therapies because of inefficacy, relapse, tolerability or side effects, yet reported greater satisfaction after switching to a regimen perceived as more effective, better tolerated, or more aligned with their treatment goals. Satisfaction may also reflect trust in the treating clinician and the limited availability of approved MOGAD-specific therapies, rather than complete disease control. Reducing the frequency and severity of relapses were important treatment goals for participants, highlighting the need for more efficacious, tolerable, and approved therapies to address these unmet needs, improve outcomes, and reduce disease burden.

The diagnosis and treatment of rare diseases are often associated with issues such as low disease awareness and insufficient specialists [15]. Patients with rare diseases often face diagnostic delays driven by a multitude of factors, including patients discounting their symptoms, clinicians underestimating the scale/impact of symptoms, and the degree of travel necessary [16, 17]. In this study, many participants were newly diagnosed, which skewed results for the mean time from first symptoms to confirmed diagnosis (adults, 4.1 years; children, 0.5 years). A previous study conducted by authors from this group found that 60.6% of patients received a MOGAD diagnosis within 6 months of their first MOGAD-related health problems, whereas 14.3% waited ≥ 7 years between first symptoms and diagnosis [9]. The challenges patients faced throughout the MOGAD diagnostic pathway (e.g., seeing a median of four doctors before diagnosis) were associated with increased frustration and physical impairment, and reduced HRQoL [9]. Another survey study of 74 neurologists and their patients with MOGAD found that median physician-reported time from symptom onset to preliminary and definitive diagnosis was 19.0 and 64.0 days, respectively [12]. Patients experienced suboptimal disease management, which affected their QoL and ability to work [12]. Further, the shorter mean time to diagnosis among children may reflect differences in clinical presentation and healthcare pathways. Pediatric MOGAD more commonly presents with ADEM or brain/brainstem attacks [8, 18], which may prompt hospitalization, neuroimaging, cerebrospinal fluid evaluation, and earlier neuroimmunologic testing. In this cohort, nearly all children had been hospitalized due to MOGAD. In addition, many of the children included in our study were diagnosed more recently, during a period of increasing clinician awareness and broader availability of MOG antibody testing. These findings should be interpreted cautiously, however, as diagnostic delay was self-reported and may be influenced by recall bias and cohort composition.

Study participants faced challenges when accessing/trying to access care, often due to delayed diagnosis/misdiagnosis or limited access to MOGAD specialists. This remained true among those diagnosed after the 2023 diagnostic guidelines were published [1]. These findings reinforce the need for improved MOGAD awareness among clinicians and a refined diagnostic pathway. Participants were frequently unaware of available support services; efforts should be made to improve awareness of, and access to, these services.

Caregivers experienced broad impacts and significant mental health burden, with similar reports in studies of caregivers of people with NMOSD. In one study, caregivers provided a mean of 40.3 h of care per week, which negatively affected travel/leisure activities, financial savings, and career advancement; additionally, 58% reported difficulty fulfilling work responsibilities [19]. In another NMOSD study, caregivers experienced substantial psychological burden, which was linked to a lack of post-diagnosis support and mistrust of medical professionals [20]. Rare diseases are generally associated with substantial caregiver burden, particularly when treatment options are limited and standards of care are not yet well established; interventions to improve QoL and productivity for caregivers are therefore required [21], as supported by our results. These findings support incorporation of caregiver assessment into routine MOGAD care. Practical models may include structured screening of caregiver needs at clinic visits, routine assessment of caregiver mental health, early referral to social work when burden is identified, education regarding relapse recognition and treatment navigation, and facilitated connection to peer support, financial assistance, and practical support services. Such approaches may be particularly important for caregivers of children, who reported broad impacts on emotions, family life, work, and social life.

Of interest, many participants were unsure whether they had relapsing or monophasic MOGAD (despite the survey providing definitions), suggesting a lack of disease awareness. We report that 92% of adults always wanted to be included in treatment decisions, suggesting this was a cohort of patients who wanted to be engaged. Improved patient–clinician communication may improve disease awareness and bolster trust in healthcare teams to manage MOGAD effectively.

Together, the unmet needs identified in this study suggest that MOGAD care should extend beyond relapse prevention. Clinical care pathways could incorporate routine screening for fatigue, weakness, pain, vision-related disability, mood symptoms, and functional impairment between attacks. Depending on patient needs, referrals to neuro-ophthalmology, rehabilitation therapies, pain management, psychology or psychiatry, and social work may help address persistent symptoms and psychosocial burden. In addition, clinicians and patient organizations may play complementary roles in improving awareness of available psychological, financial, practical, and peer support services.

This study had some limitations. Around half of the participants were from the USA (as many participants were recruited via the USA-based patient organizations The MOG Project and SRNA), and the sample was predominantly made up of white individuals, although 27 countries were represented in the sample. Selection bias is likely as participants were recruited through patient advocacy organizations and social media platforms. Individuals engaged with these organizations may be more likely to have recurrent or severe disease, higher health literacy, greater healthcare access, or stronger motivation to participate in research. In addition, although the survey was offered in three languages, individuals who did not read English, French, or Spanish were less likely to participate, limiting generalizability to other linguistic and geographic populations. Distribution of the survey in further languages may have improved participation. In addition, most participants were recently diagnosed, and results to some questions (e.g., “What is the longest period you have been stable on a preventative treatment for MOGAD prior to a relapse?”) may be underestimated due to short disease duration. The survey’s length and lack of financial compensation may have dissuaded participants, and longitudinal recall of prior experience (sometimes years) may have introduced recall bias. Results were also calculated based on the number of questions answered. The analysis does not include a summary of missing data, neither does it specifically capture how many unanswered questions were apportioned to non-compulsory survey questions. Finally, MOGAD diagnosis, disease characteristics, and treatment were self-reported without clinician confirmation, making diagnostic misclassification possible. This limitation is partially mitigated by recruitment through MOGAD-specific patient organizations, but the absence of antibody assay confirmation, medical record review, or clinician verification should be considered when interpreting our findings. It should also be noted that we did not collect a systematic breakdown of prior diagnoses, including prior MS diagnosis. Our study was not designed to compare the effectiveness of acute relapse treatments and, as such, we did not systematically collect detailed acute relapse treatment data, such as corticosteroid dose, intravenous versus oral steroid use, plasma exchange, IVIg given acutely, timing of therapy, relapse severity, or objective treatment response; this would be a valuable area for future studies to explore.

Conclusion

Multiple unmet care and support needs persist for patients with MOGAD, and patients continue to experience challenges and delays when accessing treatment. Participants are often unaware of support services available to them; therefore, improved access to and awareness of these services are needed. Treatments are often stopped or changed, highlighting the need for more efficacious, tolerable, and approved therapies. Caregivers experience significant mental health impacts, and thus, improved support is needed. Reducing the frequency and severity of relapses and preventing future relapses are important treatment goals, which would decrease disease burden for people with MOGAD and their caregivers.

Supplementary Information

Below is the link to the electronic supplementary material.

Author Contributions

Jonathan D. Santoro, Gabrielle deFiebre, Julia Lefelar, Panayotes Demakakos, Danielle Hartigh, Magali Periquet, and Jacqueline Palace conceptualized the study and study design. All authors contributed to the development of the study survey. Gabrielle deFiebre and Julia Lefelar distributed the survey via The MOG Project and the SRNA’s social media platforms. Statistical analysis of results was performed by Khaleda Ahmadyar and Zara Morrison of OPEN Health Communications, commissioned by UCB. All authors contributed to interpretation of the results, had the opportunity to review and critically revise the manuscript, and approved the final version for submission.

Funding

This study was funded by UCB. UCB representatives contributed to study conception, survey development, interpretation of results, and manuscript review. The journal’s Rapid Service Fee was funded by UCB.

Data Availability

The datasets generated and/or analyzed during the current study are outside of UCB’s data sharing policy, and are not publicly available owing to the rare nature of the disease studied and the subsequent risk of re-identification; availability of aggregated data will be considered on a case-by-case basis via the corresponding author on reasonable request.

Declarations

Conflict of Interest

Jonathan D. Santoro receives compensation through UCB on the topic of MOGAD; he also performs advisory work for TG Therapeutics and Cycle Pharmaceuticals on neuroimmunology topics not inclusive of MOGAD. Gabrielle deFiebre is Executive Director at SRNA. Julia Lefelar is Executive Director and Co-Founder of The MOG Project and a Consultant for UCB. Panayotes Demakakos and Danielle Hartigh are employees of UCB. Magali Periquet was an employee of UCB at the time of the study, and is now an employee of Krystal Biotech Germany GmbH, Berlin. Khaleda Ahmadyar and Zara Morrison were employees of OPEN Health Communications, who were commissioned by UCB to conduct the research, at the time of the study. Khaleda Ahmadyar is now an independent consultant. Zara Morrison is now an employee of Imperial College London. Jacqueline Palace has received support for scientific meetings and honoraria for advisory work from Merck Serono, Novartis, Chugai, Alexion, Roche, MedImmune, Argenx, Sanofi, UCB, Mitsubishi, Amplo Biotechnology, and Janssen; has received grants from Alexion, Roche, Medimmune, and Amplo Biotechnology; holds patent ref. P37347WO and license agreement with numares multimarker MS diagnostics; has shares in AstraZeneca; and acknowledges partial funding by highly specialized services of NHS England.

Ethical Approval

This study was approved by the institutional review board of the Children’s Hospital Los Angeles and the University of Southern California (reference number CHLA-21-01922). The study was conducted in accordance with the 1964 Declaration of Helsinki and its later amendments. All participants gave informed consent, including consent for their anonymized, aggregated data to be shared as research findings.