Harding Jessica, Masina Riccardo, Hill Anna, Ansanipour Ali, Steele Amber, Kolias Angelos, Santarius Thomas
Department of Neurosurgery, Addenbrooke's Hospital, University of Cambridge, Cambridge, UK.
Clinical School, University of Cambridge, Cambridge, UK.
Acta Neurochir (Wien). 2024 Dec 28;166(1):509. doi: 10.1007/s00701-024-06403-5.
To report the results of an international patient-reported survey that adds to the growing body of evidence surrounding the role of surgery in the management of a subset of patients with non-hydrocephalic symptomatic pineal cyst.
An international web-based survey of health outcomes in patients with nhSPC.
All survey participants who self-reported a diagnosis of symptomatic pineal cyst without hydrocephalus after radiological imaging.
The survey was developed in collaboration with the patient group Pineal Cyst UK. It was publicised and distributed via several online platforms and social media. Data collected included demographics, cyst size, symptom frequency and severity, number of appointments with healthcare professionals, treatment options trialled, and whether patients underwent surgery.
543 participants (mean age 38.6 years, range 1-83) were included in the analysis, of which 82 (mean age 38.9 years, range 16-72) had undergone cyst resection. After a median period of 18.3 months between date of surgery and date of questionnaire completion, 72 (90%) of the surgical cohort reported overall improvement, and all symptoms improved overall, whereas no symptoms improved overall in the non-surgical cohort. Of the non-surgical cohort (n = 461), 269 participants received some form of conservative treatment, of whom 194 (72.1%) did not experience symptom improvement on any treatment offered.
A cohort of patients with nhSPC who participated in this international survey reports substantial and durable improvement in symptom severity and quality of life after pineal cyst resection.
报告一项国际患者报告调查的结果，该调查为围绕手术在一部分非脑积水症状性松果体囊肿患者管理中的作用的越来越多的证据增添了内容。
一项关于非脑积水症状性松果体囊肿患者健康结局的基于网络的国际调查。
所有在影像学检查后自我报告诊断为无症状性脑积水的症状性松果体囊肿的调查参与者。
该调查是与患者组织英国松果体囊肿合作开展的。通过几个在线平台和社交媒体进行宣传和分发。收集的数据包括人口统计学、囊肿大小、症状频率和严重程度、与医疗保健专业人员的预约次数、尝试的治疗选择以及患者是否接受了手术。
543名参与者（平均年龄38.6岁，范围1 - 83岁）纳入分析，其中82名（平均年龄38.9岁，范围16 - 72岁）接受了囊肿切除术。在手术日期和问卷完成日期之间的中位时间为18.3个月后，手术队列中的72名（90%）报告总体有所改善，所有症状总体上都有所改善，而非手术队列中没有症状总体上有所改善。在非手术队列（n = 461）中，269名参与者接受了某种形式의保守治疗，其中194名（72.1%）在接受的任何治疗中都没有症状改善。
参与这项国际调查的一组非脑积水症状性松果体囊肿患者报告称，松果体囊肿切除术后症状严重程度和生活质量有显著且持久的改善。
