Herrera-Restrepo, Oscar, Afroz, Nuzhat, Cabrera, Eliazar Sabater, Reaney, Matthew, Sowell, France Ginchereau, Kumar, Ramiya, Stillman, Alicia, Wukovits, Patti, Rodrigues, Mariana, Pinto, Sofia B., Kocaata, Zeki, and Onwude, Obinna
Introduction: Invasive meningococcal disease (IMD) has a low incidence but is a life-threatening illness that is preventable via vaccination. Even with treatment, up to 10–15% of cases are fatal, and many survivors may experience severe long-term sequelae. Building upon the acute-phase findings presented in the Part 1 manuscript for this study, we describe the long-term physical, social, psychological, and economic burden of IMD on US survivors and their caregivers in this Part 2 manuscript. Methods: This was a novel, non-interventional, mixed-methods study among US survivors and their caregivers using a bespoke survey and qualitative interviews. Results: Ten adult survivors, one adolescent survivor, and three caregivers participated in this study. Survivors described extensive physical, neurological, and systemic sequelae, including difficulty walking (11/11), repeat secondary infections (9/11), and numbness (6/11), among others, which were echoed by caregivers. Survivors shared that IMD had negatively impacted their long-term quality of life, citing long-term impacts including emotional impacts (11/11), social impacts (10/11), memory (7/11) and attention (5/11) problems, and difficulty with functional (10/11), self-care (7/11), and physical (6/11) activities. Caregivers were also impacted, describing emotional trauma (3/3), sleep problems (2/3), and day-to-day challenges (2/3). Long-term financial challenges related to healthcare resource utilization were substantial, with specialized care and rehabilitation therapy expenses (11/11), insurance challenges (8/11), and high out-of-pocket costs (6/11) for survivors. Productivity losses were also commonly described by survivors (9/11); sequelae hindered ability to attend school (9/11) or work full time (8/11). Caregivers (2/3) described taking leave from their employment, affecting family income. Conclusions: The humanistic burden of IMD on survivors and their caregivers is substantial and persistent. A comprehensive approach, including preventative measures (e.g., vaccination) and long-term medical, psychological, and financial support for those affected, is needed to mitigate the burden of IMD. A video abstract is available with this article. -99uXpJYNLEniKmRRZ2d4e Video abstract (MP4 1,17,430 kb) Plain Language Summary: Invasive meningococcal disease (IMD) is an uncommon but life-threatening disease that can lead to serious long-term health problems and impacts on quality of life. We conducted this study to understand the experiences of survivors of IMD and their caregivers in the USA. In a previous paper, we described the experiences of 11 survivors and 3 caregivers during the time of IMD infection and initial recovery (the "short-term") [1]. Here, we continue to follow the journeys of those survivors and caregivers, and explore the health complications and impacts of IMD that persist long after initial recovery. Survivors experienced long-term physical, neurological, and systemic health problems due to IMD, such as difficulty walking, repeat infections, and numbness. Many shared that their quality of life had been negatively affected by IMD, describing memory and attention problems, social challenges, emotional trauma, and difficulty with daily activities. Caregivers were also impacted, experiencing sleep problems, distress, and day-to-day challenges. Even with insurance, specialized medical care and therapies were expensive and led to long-term financial challenges. Many survivors also found it difficult to attend school or work full-time because of their health limitations. Caregivers' ability to work was also limited because of caregiving needs, affecting ability to earn income. IMD places a heavy, long-term burden on survivors and their caregivers, and understanding the lived experiences of those affected is crucial. In addition to prevention (such as through vaccination), comprehensive, long-term medical, psychological, and financial support is needed to reduce the burden of this disease. [ABSTRACT FROM AUTHOR]