Wolynn Todd, Grimes John B, Nerurkar Sayali, Dawson Rachel, Galarza Katherine, Hassas Helay, Upegui Angie, Greenberg David P, Robertson Corwin A, Entenmann Heather, Jones Mann Evan, Bennetts Liga, Neary Maureen P
Public Good Projects, Pittsburgh, PA, USA.
Patient author, Frisco, TX, USA.
Infect Dis Ther. 2025 Jul 8. doi: 10.1007/s40121-025-01181-8.
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.
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.
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.
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.
青少年和青年是侵袭性脑膜炎球菌病（IMD）最常影响的人群之一，幸存者往往会留下严重且永久性的身体、神经、心理或全身性并发症。我们开展了这项针对性的文献综述，主要目的是识别与青少年或成年早期感染IMD的幸存者及其照顾者的长期健康相关生活质量（HRQoL）和经济影响相关的证据及证据空白。
我们检索了电子数据库和灰色文献，以查找评估美国或加拿大IMD幸存者长期临床、HRQoL和经济结局的研究。一名幸存者、患者倡导者以及一名儿科医生提供的专家意见被用于探讨影响和证据空白。
11项研究符合本次综述预先设定的纳入标准。美国的7项研究和加拿大的4项研究报告了感兴趣的长期结局，其中10项研究报告了IMD幸存者经历的临床后遗症，3项报告了HRQoL/社会影响，5项报告了医疗资源利用情况，4项报告了直接成本。在7项研究中，10.6%-41%的IMD幸存者有≥1种后遗症，突出的例子包括癫痫发作、耳聋或听力丧失、中风、截肢、皮肤瘢痕形成以及肾功能障碍或衰竭。定性访谈和问卷调查显示，幸存者面临重大且持续的情绪困扰和身体损伤，这限制了日常功能和社交活动。IMD后的医疗资源使用，包括住院和专科就诊次数较多，导致了大量的医疗费用，尤其是在有后遗症的幸存者中。专家意见强调，幸存者所面临的许多负担未在已发表的文献中体现，包括数十年后遗症带来的累计自付费用和间接成本，以及身体、心理和社会影响的程度。
虽然已发表的证据表明，青少年或青年时期感染IMD且有后遗症的幸存者会产生长期且重大的人文和经济影响，但仍存在相当多重要的证据空白。
