October 3, 2024

The Impact of Mental Health in Rare Disease

Living with a rare disease presents a unique set of challenges that extend far beyond dealing with physical symptoms. In addition to managing commonly complex treatment regimens and associated side effects, high prevalence of mental health comorbidities, such as anxiety and depression, compound the challenges these individuals face in managing their treatment plans and overall health. Digital solutions offer a path forward to provide access to mental health support while also supporting treatment adherence in these communities.

The Impact of Mental Health in Rare Disease

In the United States, a condition is classified as a rare disease if it affects fewer than 200,000 Americans (U.S Food and Drug Administration, 2022). Although rare, there are more than 7,000 known rare diseases that collectively impact over 300 million individuals worldwide (World Economic Forum, 2023). One of the most significant challenges in addressing rare diseases, beyond diagnosis, is effective treatment management. While much of the focus in rare disease treatment revolves around managing physical symptoms, the emotional toll on patients is frequently underestimated. 

Mental health comorbidities such as anxiety and depression are particularly prevalent among this group. A study published in BMC Health Services Research found that respondents living with or caring for someone with a rare condition frequently experience a range of negative emotions. Ninety percent of respondents reported feeling low or depressed, and 95% felt worried or anxious due to their rare condition. Common causes of negative emotions in the rare disease community include limited information on their condition; not being understood by healthcare and society; and uncertainty about the future. Additionally, the majority of survey respondents (88%) reported that the day-to-day challenges of living with a rare disease had negatively impacted their mental health (Spencer-Tansley et al, 2022).

“The most difficult experiences have been my anxiety, depression, the inability to cope with stressful situations, and physical complaints associated with my disorder.” (Shire, 2013)

The physical and emotional burden of living with a rare disease, combined with the uncertainty of the prognosis, amplifies these mental health conditions (Richardson et al., 2024). If left unaddressed, these comorbidities can significantly impair a person’s ability to follow their treatment plan, ultimately worsening health outcomes (Lapa et al., 2022).

Complex Treatment Regimens in Rare Diseases

People living with rare diseases often face challenges in managing multiple medications, which can involve different dosages and strict schedules (Ratliff, 2018). These complex treatment regimens can make it difficult for patients to follow their treatment plans correctly (Kleinsinger, 2018). Patients with rare diseases may require a variety of medications simultaneously, and managing them requires coordination between healthcare providers and pharmacists, as well as a high-level of organization at home (Shire, 2013). 

Adherence to treatment is essential for rare disease patients. Non-adherence can lead to worsening symptoms, poor health outcomes, and greater demands on healthcare systems (Genomind, 2022). However, adhering to complex treatment plans is not always straightforward, especially for rare disease patients who frequently face mental health challenges. In addition, complex medication regimens, often associated with significant side effects, can further challenge patients' ability to take their medications as prescribed (American Medical Association, 2022). The emotional and physical strain of managing complex treatment plans can be overwhelming for both patients and their families.

“I had to end my career as a paralegal as the pain and medication associated with the disease made it impossible for me to work a full-time job”  (Shire, 2013).

Addressing Mental Health and Adherence Through Digital Solutions 

Despite the widespread mental health challenges among people with rare diseases, access to effective support remains limited (Bogart, 2021). However, promising digital solutions, such as disease and drug-specific companion apps, offer innovative approaches to support both mental health and medication management for patients with rare diseases. Florens, for example, is a tailored app developed by Alex Therapeutics that supports patients with dosage, scheduling, and medication reminders, and also helps to address the psychological barriers to adherence. By incorporating cognitive behavioral therapy (CBT)-based modules, Florens supports patients in managing their well-being by providing practical strategies to help patients cope with emotional and behavioral challenges, and with managing complex treatment regimens and common side effects.

“The health care system pretty much only focuses on physical health. They throw you a bone every now and then regarding mental health, but don’t do a very good job in addressing that.” - Rare disease patient interviewed by Alex Therapeutics

Conclusion

Managing rare diseases presents patients and their families with challenges that go well beyond managing physical symptoms. The complexity of treatment regimens, combined with the mental health struggles that often accompany these conditions, makes a clear case for comprehensive adherence support to improve outcomes and overall quality of life. As access to mental health support remains a barrier, digitally delivered solutions, which integrate mental health care with medication management support, offer a promising path forward in the care of these individuals. 

To learn more about how our companion apps can support your rare disease patient populations, contact us here.

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