Empowering Patients: The Quest for Information and Better Treatment in MG

Key Takeaways:

• Today's myasthenia gravis patient actively seeks information and is eager to participate in their care.
• 90 percent of patients use online resources, with 66 percent using condition-specific websites and 60 percent relying on general internet searches for information.
• 36 percent of patients feel connecting with others in the MG community helps them feel less alone.
• Embracing a proactive approach through open dialogue and shared decision-making leads to better adherence and improved outcomes.

In recent years, a significant shift has occurred in myasthenia gravis (MG) care, with patients increasingly taking an active, empowered role in managing their condition. This proactive approach, fostered through open dialogue and shared decision-making with healthcare providers (HCPs), is crucial for better treatment adherence and improved outcomes.

The informed patient: Taking control of their journey

Today's MG patient is often highly motivated to understand their condition, its nuances, and the science behind their symptoms. For instance, the Myasthenia Gravis In America 2024 survey found that 90 percent of MG patients use online resources, with 66 percent using condition-specific websites and 60 percent relying on general internet searches for information.

The survey also found that patients are most interested in learning about:

• Treatment options (66 percent)
• New treatments and therapies (64 percent)
• MG-related conditions or complications (58 percent)

Patients recognize the importance of self-education. As one MG patient advises, "The most important thing is to educate yourself as much as possible... You need to be your own best advocate, not only for proper medical care but also to help those around you understand your illness."

Another patient adds, "We must all do as much as we can because ONLY we each individually can advocate successfully for our better/best medical outcomes, life, health, and well-being/wellness." 

It’s also common for patients to research new medications independently, with one person noting, "Whenever [HCPs] want to introduce a 'new' med, I immediately Google it and look it up on WebMD."

The pursuit of the latest therapies

The treatment landscape for MG has seen remarkable advancements, particularly in the last decade, with the emergence of targeted therapies revolutionizing treatment paradigms. Many patients with MG are keenly aware of these innovations, closely following FDA approvals, clinical trial results, and discussions within patient communities.

Despite these advancements, many patients feel their condition is not adequately controlled. The MG In America 2024 survey findings indicate:

• Just 31 percent of patients feel their MG is well-controlled with their current treatment plan.
• 39 percent plan to speak to their HCP about changing treatment in the next 6 months.

While traditional therapies like pyridostigmine (Mestinon®), oral steroids, and mycophenolate mofetil (CellCept®) are commonly used, new targeted treatments offer hope for more personalized and effective care.

For HCPs, this means being prepared to discuss these newer agents, their efficacy, potential side effects, and accessibility. An open dialogue about these options is crucial, especially as patients often arrive at appointments with questions about specific drugs they've researched.

The power of community and condition-specific resources

In their pursuit of information and support, patients with MG lean on online communities and condition-specific resources. Online forums and support groups offer a lifeline, reducing feelings of isolation and providing practical tips for managing symptoms, navigating insurance, and coping with the emotional toll of a chronic illness.

The MG in America 2024 survey highlights that:

• 36 percent of patients feel connecting with others in the MG community helps them feel less alone.
• 45 percent of patients actively try to educate others about myasthenia gravis.

It’s important for HCPs to understand the influence these communities have. Patients often gain a lot of emotional support and practical advice from their peers. HCPs can leverage these resources by directing patients to reputable organizations and encouraging participation in support groups.

Recognizing that information can come from diverse sources allows HCPs to have more holistic conversations and address patient concerns that may arise from shared experiences within these communities.

How to support and empower your patients

The MG In America 2024 survey found that 34 percent of patients are optimistic about new or upcoming treatments for MG. As one patient expressed, "It may seem as though things are tough, but with the help of family, doctors, and friends, the path to a better day is possible."

To empower patients, HCPs can follow several key strategies:

• Embrace the informed patient – View patient information-seeking as an asset, be prepared to discuss information patients have gathered, and validate and refer patients to reputable sources.
• Stay current with new therapies – The MG treatment landscape is evolving rapidly, so regularly update your knowledge on newly approved drugs and those in late-stage clinical trials.
• Acknowledge online communities – Recognize the valuable role online communities and patient organizations play, and encourage patients to engage with these resources.
• Foster shared decision-making – Empower patients by involving them actively in treatment decisions, considering their preferences, goals, and quality-of-life priorities.
• Maintain optimism, offer hope – While challenging, MG management has never been more promising. Convey this optimism to your patients.

This collaborative environment, built on knowledge, open communication, and a shared commitment to improved outcomes, allows HCPs to empower patients with MG to navigate their journey with resilience and hope, ultimately leading to better treatment and enhanced quality of life.

As one patient wisely says, "Don't sit at home suffering. Make [HCPs] figure it out for you and so they can better help others who may come behind you with the knowledge they've gained by helping you." Another patient praised their HCP for treating "holistically going for nutrition and supplements before drugs," and emphasized the "huge benefit to ALL of your medical professionals being in constant communication."