Discrepancies in Subjective Perceptions of Hydrocephalus Management and Self-Reported Outcomes

Background/Objectives: Despite surgical interventions with advances in endoscopic procedures as well as shunt technologies, the quality of life in patients with hydrocephalus can be poor. Clinical experience suggests discrepancies between objective measures of treatment success and subjective patient satisfaction. With this study, we retrospectively investigated patients' knowledge of their treatment as well as their satisfaction with received interventions. Methods: Retrospective analysis of self-reporting forms, routinely handed out in the hydrocephalus clinic of a tertiary neurosurgical center, was performed. Clinical data were gathered between 1 January 2020 and 31 March 2023. Correlation of self-reporting forms and available clinical data was performed. Results: A total of 261 forms from 215 patients were obtained. The mean age at visit was 57.5 ± 18.5 years (range 19-88). The most common pathology was normal pressure hydrocephalus (NPH, 31.6%); 31.2% had an occlusive etiology, 22.3% posthemorrhagic, 9.8% benign intracranial hypertension and 5.1% another pathology. Overall, 53% of patients (n = 114) indicated the correct therapy on the self-reporting forms (χ² (56) = 100.986, p < 0.001). Symptoms and subjective benefit did not differ in the different types of provided therapy. Conclusions: Merely half of the patients with hydrocephalus are able to correctly indicate the treatment they had received. The type of shunt valve did not affect the rate of self-reported symptoms. The symptoms and subjective benefits did not differ in the different types of provided therapy. Poor patient knowledge could correlate with poor self-reported quality of life. Medical professionals should emphasize and advocate for better patient education.