Initial Experiences with Invasive Meningococcal Disease: Insights from Survivors and Their Caregivers.

Invasive meningococcal disease (IMD) has a low incidence but is a life-threatening illness with a 10-15% mortality rate. Even with timely treatment, survivors may experience acute and long-term health complications. While meningococcal vaccines are recommended for adolescents and young adults in the USA, vaccination coverage remains uneven across serotypes. This study investigated the physical, social, psychological, and economic burden of IMD on survivors and their caregivers in the USA during the acute phase (Part 1, presented in this manuscript) and the long-term phase (Part 2, presented in a separate manuscript) of IMD. This study implemented a non-interventional, mixed-methods approach using a bespoke survey and qualitative interviews (designed on the basis of a preliminary conceptual model of IMD) with US survivors and their caregivers. A total of 11 survivors (1 adolescent, 10 adults) and 3 caregivers participated in the study. Survivors contracted IMD during infancy (n = 2), childhood (n = 3), or adulthood (n = 6), and often described leading healthy lives pre-IMD. At IMD onset, interactions with the healthcare system impacted participants' experiences; confusion and care delays were common, and procedures were often invasive (e.g., amputations). Survivors commonly experienced symptoms including skin rash (7/11), fever (6/11), and unconsciousness (6/11), consistent with caregivers' reports. Survivors able to report on the short-term impacts of IMD (n = 9) described functional limitations (9/9), emotional impacts (6/9) such as fear and trauma, and school (6/9), work (4/9), and financial (5/9) challenges. Caregivers also experienced emotional impacts (3/3) and family (2/3), work (3/3), and financial (3/3) impacts during the acute phase. IMD places a significant humanistic burden on survivors and their caregivers during the acute phase. Results from Part 1 of this study indicate a need for increased disease awareness and healthcare provider education, expeditious diagnosis, and improved access to prevention methods such as available meningococcal vaccines. A video abstract is available with this article. Video abstract (MP4 1,24,432 kb). Invasive meningococcal disease (IMD) is an uncommon but serious infection. Even with treatment, IMD is deadly for up to 10–15% of people who get sick, and survivors may experience short-term and long-term health problems. While IMD can be prevented through vaccination, many people are not vaccinated.We asked 11 survivors and 3 of their caregivers in the USA about their experiences with IMD during the time of their infection and initial recovery (the “short term”). We were particularly interested in the symptoms that survivors experienced, their diagnosis and treatment experiences, and the impact on survivors’ and caregivers’ quality of life. Most survivors described leading healthy lives before getting sick. Severe skin rash, fever, and unconsciousness were common symptoms when survivors got the infection. Most participants were admitted to the hospital when symptoms started (many through the emergency room). However, not everyone was diagnosed quickly or accurately, and many experienced delays in receiving care. Treatments could be drastic, such as immediate surgery to remove arms or legs. Survivors and caregivers described feeling scared and traumatized, and many experienced challenges with day-to-day activities. Healthcare-related expenses and the inability to attend school or work led to financial challenges for some.The burden of IMD infection and initial recovery is significant. There is a need for increased public disease awareness, targeted education for healthcare providers, and improved access to prevention measures such as vaccination. The long-term effects of IMD infection were also explored in this study, and are presented in another paper [1].

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