Evidence map›Paper›PMID 39467955›Full record

ArticleInfectious diseases and therapy2024

Life After Invasive Meningococcal Disease: Insights from Survivors and Their Caregivers.

Oscar Herrera-Restrepo, Nuzhat Afroz, Eliazar Sabater Cabrera, Matthew Reaney, France Ginchereau Sowell, Ramiya Kumar, Alicia Stillman, Patti Wukovits, Mariana Rodrigues, Sofia B Pinto and 2 more

Abstract read
In one paragraph

Article in Infectious diseases and therapy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
  4. Article
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  6. Review
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors.

Oscar Herrera-RestrepoGSK, FMC Tower Suite 1700, 2929 Walnut St, Philadelphia, PA, 19104, USA. oscar.x.herrera-restrepo@gsk.com.ORCID http://orcid.org/0000-0001-8193-999X
Nuzhat AfrozIQVIA, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0002-3048-2704
Eliazar Sabater CabreraGSK, Madrid, Spain.ORCID http://orcid.org/0000-0002-3184-2855
Matthew ReaneyIQVIA, London, UK.ORCID http://orcid.org/0000-0003-2918-722X
France Ginchereau SowellIQVIA, New York, NY, USA.ORCID http://orcid.org/0000-0002-7728-2435
Ramiya KumarIQVIA, Bangalore, India.ORCID http://orcid.org/0000-0002-0651-8316
Alicia StillmanAmerican Society for Meningitis Prevention, Farmington Hills, MI, USA.ORCID http://orcid.org/0009-0000-0295-7752
Patti WukovitsAmerican Society for Meningitis Prevention, Farmington Hills, MI, USA.ORCID http://orcid.org/0009-0005-6091-6314
Mariana RodriguesAmerican Society for Meningitis Prevention, Farmington Hills, MI, USA.ORCID http://orcid.org/0009-0009-4867-8615
Sofia B PintoGSK, Rio de Janeiro, Brazil.ORCID http://orcid.org/0000-0001-7758-6706
Zeki KocaataGSK, Wavre, Belgium.ORCID http://orcid.org/0000-0002-5231-3389
Obinna OnwudeIQVIA, London, UK.ORCID http://orcid.org/0009-0008-1811-7684

Funding

GSK ETMF-219353
6 · The paper itself

Abstract

introductionInvasive 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.

methodsThis was a novel, non-interventional, mixed-methods study among US survivors and their caregivers using a bespoke survey and qualitative interviews.

resultsTen 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.

conclusionsThe 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. Video abstract (MP4 1,17,430 kb).

Indexed as

CaregiversHRQoLIMDImpactsMixed-methodsQualitative interviewsSequelaeSurvivors

Identifiers

PMID39467955
PMCPMC11582273

What OpenQuestion holds

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LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.