Exploring the Health-Related Quality of Life and the Lived Experience of Adolescents Following Invasive Meningococcal Disease

Mark McMillan^{1

2}, Joshua McDonough^{2

3}, Margaret Angliss⁴, Jim Buttery^{4

5}, Lynda Saunders¹, Suja M Mathew¹, David Shaw⁶, David Gordon^{7

8}, Morgyn S Warner^{6

9}, Renjy Nelson^{6

9}, Rory Hannah¹⁰, Helen S Marshall^{1

2}

Affiliations

¹ Vaccinology and Immunology Research Trials Unit, Women's and Children's Health Network, Adelaide, SA 5006, Australia.
² Robinson Research Institute and Adelaide Medical School, The University of Adelaide, Adelaide, SA 5006, Australia.
³ Mental Health and Suicide Prevention Research and Education Group, Clinical and Health Sciences, University of South Australia, Adelaide, SA 5000, Australia.
⁴ Department of Paediatric Infection and Immunity, Monash Health, Melbourne, VIC 3168, Australia.
⁵ Department of Paediatrics, Monash University, Melbourne, VIC 3168, Australia.
⁶ Infectious Disease Unit, Central Adelaide Local Health Network, Adelaide, SA 5000, Australia.
⁷ Department of Microbiology and Infectious Diseases, Flinders Medical Centre, Adelaide, SA 5042, Australia.
⁸ College of Medicine and Public Health, Flinders University, Adelaide, SA 5042, Australia.
⁹ Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, SA 5000, Australia.
¹⁰ Infectious Diseases, Clinical Immunology and Allergy Division of Medicine Lyell McEwin Hospital, Adelaide, SA 5112, Australia.

PMID: 38891151
PMCID: PMC11172222
DOI: 10.3390/healthcare12111075

Exploring the Health-Related Quality of Life and the Lived Experience of Adolescents Following Invasive Meningococcal Disease

Mark McMillan et al. Healthcare (Basel). 2024.

. 2024 May 24;12(11):1075.

doi: 10.3390/healthcare12111075.

Authors

Affiliations

¹ Vaccinology and Immunology Research Trials Unit, Women's and Children's Health Network, Adelaide, SA 5006, Australia.
² Robinson Research Institute and Adelaide Medical School, The University of Adelaide, Adelaide, SA 5006, Australia.
³ Mental Health and Suicide Prevention Research and Education Group, Clinical and Health Sciences, University of South Australia, Adelaide, SA 5000, Australia.
⁴ Department of Paediatric Infection and Immunity, Monash Health, Melbourne, VIC 3168, Australia.
⁵ Department of Paediatrics, Monash University, Melbourne, VIC 3168, Australia.
⁶ Infectious Disease Unit, Central Adelaide Local Health Network, Adelaide, SA 5000, Australia.
⁷ Department of Microbiology and Infectious Diseases, Flinders Medical Centre, Adelaide, SA 5042, Australia.
⁸ College of Medicine and Public Health, Flinders University, Adelaide, SA 5042, Australia.
⁹ Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, SA 5000, Australia.
¹⁰ Infectious Diseases, Clinical Immunology and Allergy Division of Medicine Lyell McEwin Hospital, Adelaide, SA 5112, Australia.

PMID: 38891151
PMCID: PMC11172222
DOI: 10.3390/healthcare12111075

Abstract

Background: Data on the health-related quality of life (HRQoL) for invasive meningococcal disease (IMD) survivors, particularly among adolescents and young adults (AYAs), are limited. This study aimed to investigate the in-depth experiences and impacts of IMD on AYAs.

Methods: Participants were recruited from two Australian states, Victoria and South Australia. We conducted qualitative, semi-structured interviews with 30 patients diagnosed with IMD between 2016 and 2021. The interview transcripts were analyzed thematically.

Results: Of the participants, 53% were aged 15-19 years old, and 47% were aged 20-24. The majority (70%) were female. Seven themes relating to the participants' experience of IMD were identified: (1) underestimation of the initial symptoms and then rapid escalation of symptoms; (2) reliance on social support for emergency care access; (3) the symptoms prompting seeking medical care varied, with some key symptoms missed; (4) challenges in early medical diagnosis; (5) traumatic and life-changing experience; (6) a lingering impact on HRQoL; and (7) gaps in the continuity of care post-discharge.

Conclusion: The themes raised by AYA IMD survivors identify multiple areas that can be addressed during their acute illness and recovery. Increasing awareness of meningococcal symptoms for AYAs may help reduce the time between the first symptoms and the first antibiotic dose, although this remains a challenging area for improvement. After the acute illness, conducting HRQoL assessments and providing multidisciplinary support will assist those who require more intensive and ongoing assistance during their recovery.

Keywords: adolescents and young adults; health-related quality of life; invasive meningococcal disease.

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Conflict of interest statement

H.S.M. is an investigator of vaccine trials sponsored by industry (the GSK group of companies, Novavax, Pfizer). H.S.M.’s, S.M.M.’s M.M.’s, J.B.’s, L.S.’s, and J.M.’s respective institutions receive funding for investigator-led studies (including from Pfizer, Sanofi-Pasteur, and the GSK group of companies). H.S.M., S.M.M., M.M., J.B., L.S., and J.M. receive no personal payments from industry. R.N. is an investigator of trials sponsored by industry (Astra Zeneca, Medpace Armata Pharmaceuticals). R.N. does not receive any personal payments from industry. The funders had no role in the design of the study; in the collection, analyses, or interpretation of the data; in the writing of the manuscript; or in the decision to publish the results.

Figures

**Figure 1**
Barriers to timely first dose of antibiotics.

See this image and copyright information in PMC

References

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Exploring the Health-Related Quality of Life and the Lived Experience of Adolescents Following Invasive Meningococcal Disease

Affiliations

Exploring the Health-Related Quality of Life and the Lived Experience of Adolescents Following Invasive Meningococcal Disease

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

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Full Text Sources

Medical