Herrera-Restrepo Oscar, Afroz Nuzhat, Cabrera Eliazar Sabater, Reaney Matthew, Sowell France Ginchereau, Kumar Ramiya, Stillman Alicia, Wukovits Patti, Rodrigues Mariana, Pinto Sofia B, Kocaata Zeki, Onwude Obinna
GSK, FMC Tower Suite 1700, 2929 Walnut St, Philadelphia, PA, 19104, USA.
IQVIA, Amsterdam, The Netherlands.
Infect Dis Ther. 2024 Dec;13(12):2563-2579. doi: 10.1007/s40121-024-01060-8. Epub 2024 Oct 29.
Invasive 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.
This was a novel, non-interventional, mixed-methods study among US survivors and their caregivers using a bespoke survey and qualitative interviews.
Ten 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.
The 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).
侵袭性脑膜炎球菌病（IMD）发病率较低，但却是一种可通过接种疫苗预防的危及生命的疾病。即便经过治疗，仍有10% - 15%的病例会死亡，许多幸存者可能会经历严重的长期后遗症。基于本研究第1部分手稿中呈现的急性期研究结果，我们在本第2部分手稿中描述了IMD对美国幸存者及其照料者造成的长期身体、社会、心理和经济负担。
这是一项针对美国幸存者及其照料者的新颖的非干预性混合方法研究，采用了定制调查问卷和定性访谈。
10名成年幸存者、1名青少年幸存者和3名照料者参与了本研究。幸存者描述了广泛的身体、神经和全身后遗症，包括行走困难（11/11）、反复继发感染（9/11）和麻木（6/11）等，照料者也证实了这些情况。幸存者表示IMD对他们的长期生活质量产生了负面影响，提到的长期影响包括情绪影响（11/11）、社会影响（10/11）、记忆（7/11）和注意力（5/11）问题，以及功能（10/11）、自我护理（7/11）和身体活动（6/11）方面的困难。照料者也受到了影响，描述了情感创伤（3/3）、睡眠问题（2/3）和日常挑战（2/3）。与医疗资源利用相关的长期经济挑战很大，幸存者面临专科护理和康复治疗费用（11/11）、保险问题（8/11）以及高额自付费用（6/1）。幸存者还普遍提到了生产力损失（9/11）；后遗症阻碍了上学（9/11）或全职工作（8/11）的能力。照料者（2/3）表示请假影响了家庭收入。
IMD对幸存者及其照料者造成的人文负担巨大且持续存在。需要采取综合措施，包括预防措施（如接种疫苗）以及为受影响者提供长期医疗、心理和经济支持，以减轻IMD的负担。本文配有视频摘要。视频摘要（MP4 1,17,430 kb）
