Key Information
Background
All types of amyloidosis are rare, progressive, and potentially fatal disorders that are difficult to diagnose and treat. Correct diagnosis of amyloidosis is often delayed due to the nonspecific nature of symptoms and misdiagnoses leading to delays in treatment initiation. This delay results in considerable medical and financial burden on patients and their caregivers. While standardized quality-of-life instruments used in randomized controlled trials yield helpful data for healthcare professionals providing care for patients with amyloidosis, they often do not fully capture the patient perspective on living with the disease. Further, the COVID-19 pandemic placed new and sometimes unanticipated burdens on patients, caregivers, and medical personnel. We report here the results on patient, advocate, and caregiver (PAC) perspectives during the initial stages of the COVID-19 pandemic from an online community of people involved with amyloidosis.
Objective
To augment our understanding of amyloidosis by collecting and sharing the PAC experience. To fill knowledge gaps that can continue to raise disease awareness and understanding from the patient and caregiver perspective.
Methods
Outreach to the amyloidosis community was initiated through oneAMYLOIDOSISvoice.com, an online, amyloidosis specific educational platform. People were encouraged to respond to polls and surveys via - A complementary social media outreach plan on Facebook, Instagram, and Twitter; Featuring these opportunities on the Social Wall of the platform for registered members to provide their perspectives; Direct email to registered members.
Over the last 2 years, 17 single-question polls and 7 short surveys were posted. In addition, >1000 Social Wall posts by members of the amyloidosis community were evaluated to capture real-world insights into the impact that amyloidosis has on their lives. All data were aggregated and anonymized to preserve the privacy of respondents. The data are reported as summary statistics.
Conclusions
A more complete understanding of the amyloidosis experience should include a disease impact assessment and its challenges from the patient perspective. Our ability to treat the whole patient relies on our ability to understand the patient journey and its far-reaching implications on the daily lives of those impacted by the disease. The data reported here reflect the real-world experiences and concerns of patients with amyloidosis and their caregivers. - These data provide insights into what is important to the PAC community. Single-question polls and short surveys in a disease-specific online community offer a quick and easy method to gain insight into life with amyloidosis that has heretofore been unpublished. While the results can only be reported descriptively, they nonetheless are highly informative for those treating patients with amyloidosis. This is the first step in obtaining comprehensive PAC input into living with amyloidosis.