Burden of Invasive Meningococcal Disease in Survivors and Their Caregivers in the United States: A Cross-Sectional Non-Interventional Mixed Methods Study

OBJECTIVES: This study investigated the long-term physical, psychological, and financial burden of invasive meningococcal disease (IMD) in survivors and their caregivers in the United States (US).

METHODS: A double-blind, cross-sectional, non-interventional, mixed methods (qualitative-quantitative) study was conducted in IMD survivors (adolescents and adults) and their caregivers, living in the US. Patient advocacy groups collaborated with recruitment. Qualitative interviews using probes were conducted, following informed consent/assent, screening, and a pre-interview survey. Quantitative data were analyzed descriptively. Qualitative analyses used inductive-deductive methods. Institutional Review Board approval was obtained.

RESULTS: Participants included 11 survivors (mean age 36 years [range 14-51]) and 3 caregivers (mean age 58 years [30-60]). At IMD diagnosis, survivors were infants (n=2), children (n=3) or adults (n=6). All survivors described transitioning from "perfect/healthy/normal" lives to becoming "medically fragile" and reliant on others. Long-term sequelae reported by survivors included physical sequelae (difficulty walking [11/11], fatigue [9/11], balance issues [10/11]); neurological sequelae (numbness [5/11], nerve-related pain [3/11], light sensitivity [4/11]); and systemic sequelae (repeat secondary infections [9/11], musculoskeletal pain [9/11], kidney issues [5/11]). Most survivors reported impacts on memory (7/11), attention (5/11), sleep disturbances (6/11), physical problems using devices (prosthetics/hearing aids) (10/11), trauma/post-traumatic stress disorder (9/11), worry (9/11), and social difficulties (10/11). Functional activities (10/11) were severely impacted. Amputation appeared to be the most impactful sequelae (very severe impact reported in 4/7 amputees). Substantial long-term costs included rehabilitation, specialized medical care, and prosthetics/hearing aids (requiring out-of-pocket expenditure). Many survivors had concerns about insurance coverage. Working-age survivors (8/9) cited full-time work challenges including physical limitations and memory issues/brain fog. Caregivers experienced emotional distress and career impacts. The psychological burden of survivor’s care persisted long after IMD onset.

CONCLUSIONS: IMD burden in survivors and caregivers is broad with lifelong physical, psychological, and economic consequences. Prevention is key to mitigating the impact of IMD.