PDF(Pubmed)
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.
CONCLUSIONS: 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.
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.
CONCLUSIONS: 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.
摘要：
背景：侵袭性脑膜炎球菌病（IMD）幸存者的健康相关生活质量（HRQoL）数据，特别是在青少年和年轻人(AYAs)中，是有限的。本研究旨在探讨IMD对AYAs的深入经验和影响。
方法：参与者来自澳大利亚两个州，维多利亚和南澳大利亚。我们进行了定性，对2016年至2021年间诊断为IMD的30例患者进行了半结构化访谈。面试记录进行了主题分析。
结果：在参与者中，53%的人年龄在15-19岁之间,47%的人年龄在20-24岁之间。大多数（70％）是女性。确定了与参与者的IMD经验相关的七个主题：（1）低估了最初的症状，然后症状迅速升级；（2）依赖社会支持来获得紧急护理；（3）促使寻求医疗护理的症状各不相同，漏诊了一些关键症状;(4)早期医学诊断的挑战;(5)创伤和改变生活的经历;(6)对HRQoL的挥之不去的影响;(7)出院后护理连续性的差距。
结论：AYAIMD幸存者提出的主题确定了在其急性疾病和康复期间可以解决的多个领域。提高对AYAs脑膜炎球菌症状的认识可能有助于减少第一次症状和第一次抗生素剂量之间的时间。尽管这仍然是一个具有挑战性的改进领域。在急性疾病之后，进行HRQoL评估并提供多学科支持将帮助那些在康复过程中需要更密集和持续援助的人。
方法：参与者来自澳大利亚两个州，维多利亚和南澳大利亚。我们进行了定性，对2016年至2021年间诊断为IMD的30例患者进行了半结构化访谈。面试记录进行了主题分析。
结果：在参与者中，53%的人年龄在15-19岁之间,47%的人年龄在20-24岁之间。大多数（70％）是女性。确定了与参与者的IMD经验相关的七个主题：（1）低估了最初的症状，然后症状迅速升级；（2）依赖社会支持来获得紧急护理；（3）促使寻求医疗护理的症状各不相同，漏诊了一些关键症状;(4)早期医学诊断的挑战;(5)创伤和改变生活的经历;(6)对HRQoL的挥之不去的影响;(7)出院后护理连续性的差距。
结论：AYAIMD幸存者提出的主题确定了在其急性疾病和康复期间可以解决的多个领域。提高对AYAs脑膜炎球菌症状的认识可能有助于减少第一次症状和第一次抗生素剂量之间的时间。尽管这仍然是一个具有挑战性的改进领域。在急性疾病之后，进行HRQoL评估并提供多学科支持将帮助那些在康复过程中需要更密集和持续援助的人。
