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Papers of the Week


Papers: 12 Aug 2023 - 18 Aug 2023

RESEARCH TYPE:
Psychology


Human Studies, Neurobiology

PAIN TYPE:
Migraine/Headache, Psychological/Comorbidities


2023 Aug 15


J Patient Rep Outcomes


37581717


7


1

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

Authors

Amrhein TJ, McFatrich M, Ehle K, Malinzak MD, Gray L, Kranz PG, Weant EH, Zigler CK

Abstract

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.