Regional variation in vestibular schwannoma management and patient support group participation across the United States.

[PURPOSE] The Acoustic Neuroma Association (ANA) represents the largest existing patient support organization for those diagnosed with vestibular schwannoma (VS) in the United States. Yet, the degree to which the ANA is actually utilized across the country is unknown. Moreover, evidence suggests that there may exist significant regional variation in management practices of VS across the United States.

[MATERIALS AND METHODS] Patient participation in the ANA by state and geographical region, as well as their management approach, was reviewed through a cross-sectional survey performed from February 2017 through January 2019, patients diagnosed with sporadic VS.

[RESULTS] Among 878 patients studied, the District of Columbia had the largest proportion of ANA patients relative to state population (0.85 per 100,000 persons), followed by New Hampshire (0.74), Maine (0.60), and New Jersey (0.42). Comparatively, Mississippi (0.03), Hawaii (0.07), and Rhode Island (0.09) harbored significantly lower participation rates (p = 0.001). Significant treatment variations were observed across the United States: in Maine, Iowa, Missouri, Kansas, and New Hampshire, an average of 73% (range, 70-75) of patients underwent microsurgery, whereas only 24% (range, 0-35) of patients in Colorado, New York, Massachusetts, Connecticut, and West Virginia underwent microsurgery (p < 0.001). After controlling for patient age and tumor size, patients were significantly more likely to undergo a retrosigmoid approach than the translabyrinthine approach for medium- to large-sized tumors in the Northeast (OR = 4.18; p = 0.001) and Western United States (OR = 2.94; p = 0.009).

[CONCLUSIONS] Large regional variation exists surrounding patient participation in the ANA as well as management practices across the United States.