Patient experience of spontaneous intracranial hypotension (SIH): qualitative interviews for concept elicitation.

ABSTRACT:

Background & objectives

Spontaneous intracranial hypotension (SIH) is an underdiagnosed and debilitating condition caused by a spinal cerebrospinal fluid (CSF) leak. Although SIH can lead to substantial morbidity and disability, little data exists about patients' perspectives. Without hearing directly from patients, our understanding of the full experience of having SIH is limited, as is our ability to identify and use appropriate patient-reported outcome measures (PROMs) within clinical care and research. The purpose of this study was to conduct qualitative interviews with confirmed SIH patients to fully describe their experiences and identify relevant concepts to measure.

Methods

Patients were recruited from an SIH specialty clinic at a large, U.S.-based healthcare center.

SUBMITTER: Amrhein TJ 

PROVIDER: S-EPMC10427581 | biostudies-literature | 2023 Aug

REPOSITORIES: biostudies-literature