Long-Term Impacts of Invasive Meningococcal Disease on Survivors and Their Caregivers in the United States and Canada
Bibliographic record
Abstract
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.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.005 | 0.025 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.002 | 0.002 |
| Bibliometrics | 0.010 | 0.020 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.004 | 0.001 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".