Long-Term Impacts of Invasive Meningococcal Disease on Survivors and Their Caregivers in the United States and Canada.

Introduction: Adolescents and young adults are among those most often impacted by invasive meningococcal disease (IMD), and survivors are often left with serious and permanent physical, neurological, psychological, or systemic complications. We conducted this targeted literature review with the primary goal of identifying evidence and evidence gaps relating to long-term health-related quality-of-life (HRQoL) and economic impacts for survivors who contracted IMD during adolescence or early adulthood and their caregivers.

Methods: We searched electronic databases and gray literature for studies assessing long-term clinical, HRQoL, and economic outcomes for patients who survived IMD in the US or Canada. Expert input provided by a survivor and patient advocate, as well as a pediatrician, was used to explore impacts and evidence gaps.

Results: Eleven studies met the prespecified inclusion criteria for this review. Seven studies from the US and four from Canada reported on long-term outcomes of interest, including ten studies reporting clinical sequelae experienced by IMD survivors, three reporting HRQoL/social impacts, five reporting healthcare resource utilization, and four reporting direct costs. Across seven studies, 10.6-41% of IMD survivors had ≥ 1 sequelae, with prominent examples including seizures, deafness or hearing loss, stroke, amputation, skin scarring, and renal dysfunction or failure. Qualitative interviews and questionnaires revealed that survivors face significant and persistent emotional distress and physical impairment that limit daily functioning and social activities. Healthcare resource use, including inpatient stays and specialist visits following IMD was high, leading to substantial healthcare costs, especially among survivors with sequelae. Expert input highlighted that much of the burden encountered by survivors is not included in the published literature, including the cumulative out-of-pocket and indirect costs of living with sequelae for decades and the extent of the physical, psychological, and social impacts.

Conclusion: While published evidence suggests that survivors with sequelae from IMD during adolescence or young adulthood have long-term and significant humanistic and economic impacts, considerable and important evidence gaps remain.