International web-based survey of patients with non-hydrocephalic symptomatic pineal cysts

Objectives

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.

Design

An international web-based survey of health outcomes in patients with nhSPC.

Subjects

All survey participants who self-reported a diagnosis of symptomatic pineal cyst without hydrocephalus after radiological imaging.

Methods

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.

Results

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.

Conclusions

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.