Financial strain weighs heavily on people with gMG and their caregivers

Financial strain and disruptions in planning and independence were among the most relevant burdens reported by people living with generalized myasthenia gravis (gMG) and their caregivers, according to a U.S. study.

The reported burden tended to be greater among patients with more severe disease and among caregivers who were unemployed, retired, or disabled.

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“These findings provide additional insight into the comprehensive burden of gMG that extends beyond symptoms and medical costs,” the researchers wrote.

The study, “Characterizing and quantifying disease impacts of generalized myasthenia gravis (gMG) in the United States: insights from patient and caregiver interviews and surveys,” was published in the Journal of Patient-Reported Outcomes.

In gMG, the immune system produces self-reactive antibodies that attack the connection between nerves and muscles, leading to muscle weakness throughout the body.

“The impact of rare diseases such as gMG is often defined by clinical outcomes of patients and direct medical costs borne by patients and payers,” the researchers wrote. However, because gMG heavily affects families and/or caregivers, it requires “a more holistic approach that centers around impacted individuals across all areas of daily life.”

Still, data on patients’ and caregivers’ experiences with gMG remain limited.

To build a fuller picture of how the disease affects daily life beyond standard clinical measures, researchers first interviewed 16 adults with gMG, ages 18 to 64, and 12 unpaid caregivers in the U.S. All 16 patients had physician-documented gMG associated with antibodies against the acetylcholine receptor, or AChR.

Interviews reveal 84 ways gMG affects daily life

A total of 84 distinct “impact experiences” were identified and grouped into 25 broader “impact elements” across eight areas of life: occupation, finances, emotional health, physical health, sleep, social life, planning and autonomy, and safety.

Among those interviewed, financial impacts were reported by all patients and caregivers. Impacts on occupation were reported by 88% of patients and 92% of caregivers, while 81% of patients and 75% of caregivers reported effects on planning and autonomy. Fourteen of the 84 impacts had not been previously described in the medical literature, including patients carefully budgeting their limited energy and caregivers describing a constant sense of being on call.

“Whenever I see the phone rings and the call comes through, I’m like… I hope it’s just ‘don’t forget the oranges.’ You’re always walking on glass… You’re always alert,” a caregiver said.

The interviews also revealed safety-related concerns not previously captured in the literature, including fear stemming from physical vulnerability and concerns about treatment or real or perceived medical mistreatment. One patient explained: “A lot of times I don’t like walking with my cane because disabled people are often victims of crime. I live in a city with a lot of crime, so sometimes that’s in the back of my mind, because I can’t run, I can’t scream, because of [gMG].”

Financial strain described by both patients and caregivers involved substantial expenses. “I have to pay for convenience, food delivery, transportation services, medications that are not covered by insurance, that’s a substantial cost,” a patient said.

Some caregivers also described costs related to home modifications, from floor leveling and bathroom adaptations to creating step-free passages.

Social and emotional effects weigh on both groups

Both groups also described withdrawing from social activities after the patient’s gMG diagnosis. One patient said: “I don’t really have a social life anymore… After a couple of falls, it was like, not really wanting to fall in front of everyone, or get all the questions, the stares, the this, the that, and so a lot of that I just stopped.”

Emotional impacts were described differently by patients and caregivers. Patients described feeling that the disease had become central to their identity. “But unfortunately, everything about me now is about this disease, which is really not who I am. So that’s been kind of a drag because everyone’s like, ‘oh, how are you?’ It’s like well, you know,” one patient said.

Caregivers, meanwhile, described feeling guilty about acknowledging their own emotional strain. One caregiver said: “I feel selfish talking about my emotional health, because I think of what she deals with, but I do have to acknowledge that it does impact my emotional health as well.”

Based on the interview findings, the researchers developed a survey, which was completed by 239 people with gMG and 81 caregivers. The survey participants were recruited separately from the interview participants through patient advocacy groups, support groups, and other channels.

Results showed that, for both patients and caregivers, the financial domain had the highest numerical relevance score, driven largely by reduced personal or household income and the need to make financial trade-offs. This suggests that “indirect costs and impacts that are difficult to monetize are at least as relevant to patient and caregiver lives as direct medical costs,” the team wrote.

Planning, health, and sleep impacts vary across groups

The other domains with the highest relevance scores were planning and autonomy and physical health among patients, and planning and autonomy and sleep among caregivers.

Impact scores tended to be higher among patients with more severe disease, younger patients (ages 18 to 49), and female patients. They also tended to be higher among female caregivers and caregivers who were unemployed, retired, or disabled than among those employed full time.

“These impacts, many of which cannot be quantified with a monetary value, should be considered when assessing the overall disease burden of gMG in addition to direct medical costs, patient outcomes, and treatment benefits,” the researchers wrote. “Future evaluation of these impacts will be important to better understand the potential benefits associated with gMG treatments.”

The study was sponsored by Alexion, AstraZeneca Rare Disease.