Social inequalities spark healthcare challenges in treatment of gMG

Financial worry, mental health are top concerns for patients: Study

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

Share this article:

Share article via email
An illustration of

Barriers posed by social determinants of health can lead to a complex set of challenges — most centered on financial worry and mental health — for people with generalized myasthenia gravis (gMG), according to a small study done in the U.S.

Researchers found that these challenges had an impact across the diagnosis and treatment of patients with the chronic autoimmune disorder.

Moreover, they noted that individuals with the neuromuscular disease may not always be widely aware of existing support services.

Even so, “educational, financial, and personalized support with high ‘human touch’ were commonly perceived as the most valuable resources,” the investigators wrote.

The study, “Impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programs,” was published in the journal Frontiers in Public Health.

Recommended Reading
#RAREis Representation program | Horizon Therapeutics | illustration of hands-in

#RAREis Representation Program Promotes Equity, Diversity

Patient survey aimed to ID common challenges in gMG

Social determinants of health are factors that can affect a person’s overall health and well-being. These factors go beyond an individual’s own choices and can include the conditions in which a person is born, grows, lives, works, and ages.

Identifying and addressing these factors are important for reducing health inequalities among people living with gMG, according to the investigators, who note that their research may “help improve the design of patient support programs (PSPs), using targeted approaches to remove barriers to access.”

“Better understanding their impact on individuals diagnosed with rare, chronic diseases with high burden and unmet need is critical,” the team wrote of these social determinants of health.

To know more, the researchers interviewed 11 patients, two caregivers, and two representatives of patient advocacy groups.

The gMG patients “were a diverse group with varying age, racial/ethnic background, gender, living environment, education level, insurance type, and employment status,” according to the team.

The interview was done over the phone and lasted about 45 minutes. Its goal was to identify common challenges overall, and throughout disease diagnosis, access to treatment, start of treatment, and ongoing treatment.

“Financial constraints and profound lifestyle shifts were most commonly expressed by interviewees as challenges throughout their experience of receiving a diagnosis and treatment for gMG,” the researchers wrote.

Other challenges included navigating insurance coverage, keeping jobs, and accessing resources.

Patients and caregivers were not widely aware of existing support services, and often looked for information on social media communities, the researchers found.

Dealing with these challenges worsened fatigue, a hallmark gMG symptom that often worsens after periods of activity. It also had a toll on mental health, including anxiety and fear of an exacerbation, social isolation, emotional distress or despair, and suicidal ideation.

These insights were used to develop an online survey that took about 20 minutes to complete and was available in English and Spanish.

Recommended Reading
Rare Disease Day 2022 | Custom illustration of Rare Disease Day 2022

Rare Disease Day Panel Opens Window to Patient Experience

Financial worry for patients extends beyond gMG care itself

The survey was completed by 38 patients, ages 18 to 75. More than half of the respondents (60%) were non-white individuals. About one-third — 34.2% or 13 respondents — were insured by Medicaid, while 44.7%, or 17 respondents, were covered by Medicare.

Most of their challenges were centered around financial concerns and worry about money. About 76% of patients reported “problems making ends meet at the end of the month” and half reported “worry or concern that they may not have stable housing.”

Half also reported “low to neutral confidence in navigating their healthcare and treatment experience with ease,” and almost as many (39%) expressed “unmet needs around social support and disease education.”

At the time of diagnosis, a majority of patients (61%) worried about how the diagnosis might change their lifestyle, and many (45%) experienced fear and confusion due to not yet understanding the disease. Most said they preferred receiving support information from doctors (71%), support groups (45%), and other patients (34%).

This study begins to address a critical knowledge gap, highlighting previously underexplored perspectives to understand how support for diagnosed individuals, their social environment, and the healthcare system can be further improved for rare diseases such as gMG.

When seeking access to treatment, many patients worried about financial challenges. These included qualifying and paying for treatment (47%) and navigating assistance programs (45%). Anxiety associated with financial concerns and worry over money was common (39%).

At the start of treatment, nearly three-quarters of patients (71%) worried about potential side effects, whereas during treatment, about half worried about experiencing an exacerbation or having to make long-term changes in their lifestyle.

“This study begins to address a critical knowledge gap, highlighting previously underexplored perspectives to understand how support for diagnosed individuals, their social environment, and the healthcare system can be further improved for rare diseases such as gMG,” the researchers wrote.

“’High-touch’ and tailored support programs may be better suited to improve outcomes for underserved populations,” the team wrote, adding that “deliberately increasing visibility and expanding inclusivity of support networks can further benefit individuals living with gMG” and barriers to health caused by social determinants.