Enhancing Clarity in Dynamic Myelography Reporting: Results of a Survey of Patients and Referring Providers Evaluating a Standardized Reporting System in the Myelographic Workup of Patients with Suspected Spontaneous Intracranial Hypotension

BACKGROUND AND PURPOSE: Dynamic myelography is a critical diagnostic tool for identifying cerebrospinal fluid (CSF) leaks, yet the current lack of standardized reporting can lead to variability in both clinical decision-making and patient understanding. To address these issues, we developed the Spontaneous Intracranial Hypotension Reporting and Data System (SIH-RADS), a standardized scoring system designed to categorize findings on dynamic myelography based on the degree of diagnostic certainty. We then administered a survey to patients and referring providers in order to evaluate the perceived value, clarity, and impact of SIH-RADS on patient and provider experiences as an adjunct to traditional reporting methods for dynamic myelography.

MATERIALS AND METHODS: The SIH-RADS scoring system was developed as a collaborative effort between patients and physicians, with six categories ranging from “Definite Positive with Precise Localization” (SIH-RADS 5) to “Technical Failure” (SIH-RADS 0). Surveys were distributed to three groups: (1) patients who had undergone myelography at our institution for suspected SIH, (2) anonymous patients via private spinal CSF leak groups on social media who had previously undergone myelography, and (3) referring providers who order myelograms for SIH evaluation. Survey questions assessed understanding of traditional reports, clarity of the SIH-RADS system, its impact on decision-making, and preferences for future reporting. Statistical comparisons between local and anonymous patient responses were performed using chi-square tests for categorical variables and t-tests for continuous variables. The observational study STROBE Checklist was utilized, with the proposed methodology followed.

RESULTS: A total of 125 patients (78 local patients, 47 anonymous patients) and 13 providers participated in the survey. Among patients, 77% expressed a preference for SIH-RADS over traditional reporting methods, and 58% believed it would improve their understanding of myelography results. Among providers, 92% favored adopting SIH-RADS for future reports, with 85% rating it as very or extremely useful for guiding clinical decisions. 92% of providers reported that the standardized system would enhance communication with patients. Qualitative feedback emphasized the benefits of clearer categorization and actionable recommendations, while also highlighting opportunities to refine patient-facing language and address ambiguities in intermediate scores.

CONCLUSIONS: A structured reporting system improves the perceived clarity, utility, and communication of dynamic myelography findings among both patients and providers.

ABBREVIATIONS: CSF = cerebrospinal fluid; SIH = spontaneous intracranial hypotension; CVF = CSF venous fistula.