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):2581-2595. doi: 10.1007/s40121-024-01061-7. Epub 2024 Oct 29.
Invasive meningococcal disease (IMD) has a low incidence but is a life-threatening illness with a 10-15% mortality rate. Even with timely treatment, survivors may experience acute and long-term health complications. While meningococcal vaccines are recommended for adolescents and young adults in the USA, vaccination coverage remains uneven across serotypes. This study investigated the physical, social, psychological, and economic burden of IMD on survivors and their caregivers in the USA during the acute phase (Part 1, presented in this manuscript) and the long-term phase (Part 2, presented in a separate manuscript) of IMD.
This study implemented a non-interventional, mixed-methods approach using a bespoke survey and qualitative interviews (designed on the basis of a preliminary conceptual model of IMD) with US survivors and their caregivers.
A total of 11 survivors (1 adolescent, 10 adults) and 3 caregivers participated in the study. Survivors contracted IMD during infancy (n = 2), childhood (n = 3), or adulthood (n = 6), and often described leading healthy lives pre-IMD. At IMD onset, interactions with the healthcare system impacted participants' experiences; confusion and care delays were common, and procedures were often invasive (e.g., amputations). Survivors commonly experienced symptoms including skin rash (7/11), fever (6/11), and unconsciousness (6/11), consistent with caregivers' reports. Survivors able to report on the short-term impacts of IMD (n = 9) described functional limitations (9/9), emotional impacts (6/9) such as fear and trauma, and school (6/9), work (4/9), and financial (5/9) challenges. Caregivers also experienced emotional impacts (3/3) and family (2/3), work (3/3), and financial (3/3) impacts during the acute phase.
IMD places a significant humanistic burden on survivors and their caregivers during the acute phase. Results from Part 1 of this study indicate a need for increased disease awareness and healthcare provider education, expeditious diagnosis, and improved access to prevention methods such as available meningococcal vaccines. A video abstract is available with this article. Video abstract (MP4 1,24,432 kb).
侵袭性脑膜炎球菌病（IMD）发病率较低，但却是一种危及生命的疾病，死亡率为10%-15%。即使及时治疗，幸存者也可能会出现急性和长期的健康并发症。虽然美国建议青少年和年轻人接种脑膜炎球菌疫苗，但各血清型的疫苗接种覆盖率仍不均衡。本研究调查了在美国IMD急性期（本文第1部分）和长期阶段（第2部分，在另一篇稿件中呈现）IMD对幸存者及其照顾者造成的身体、社会、心理和经济负担。
本研究采用非干预性的混合方法，对美国的幸存者及其照顾者进行定制调查和定性访谈（基于IMD的初步概念模型设计）。
共有11名幸存者（1名青少年，10名成年人）和3名照顾者参与了研究。幸存者在婴儿期（n = 2）、儿童期（n = 3）或成年期（n = 6）感染了IMD，他们经常描述在感染IMD之前过着健康的生活。在IMD发病时，与医疗系统的互动影响了参与者的经历；常见的情况包括困惑和治疗延误，而且治疗程序往往具有侵入性（例如截肢）。幸存者普遍出现的症状包括皮疹（7/11）、发烧（6/11）和昏迷（6/11），这与照顾者的报告一致。能够报告IMD短期影响的幸存者（n = 9）描述了功能受限（9/9）、情绪影响（6/9），如恐惧和创伤，以及学校（6/9）、工作（4/9）和经济（5/9）方面的挑战。照顾者在急性期也经历了情绪影响（3/3）以及家庭（2/3）、工作（3/3）和经济（3/3）方面的影响。
在急性期，IMD给幸存者及其照顾者带来了巨大的人文负担。本研究第1部分的结果表明，需要提高疾病认知度，加强对医疗服务提供者的教育，加快诊断，并改善获得预防方法的途径，如现有的脑膜炎球菌疫苗。本文配有视频摘要。视频摘要（MP4 1,24,432 kb）。
