Regional Variation in Patient Participation and Treatment among Acoustic Neuroma Association Survey Respondents Across the United States

Background: The Acoustic Neuroma Association (ANA) represents the largest existing patient support organization for those diagnosed with vestibular schwannoma (VS) in the United States. Despite the significant resources the ANA offers to patients, the degree to which the ANA is utilized across the country is unknown. In addition to potential regional differences in utilization of the ANA, some research suggests that treatment paradigms vary geographically across the United States.

Objectives: First, to characterize the utilization of patient support services across the United States, and second, to characterize the variation in treatment approaches by region among ANA survey respondents.

Study Design: Cross-sectional survey performed from February, 2017 through January, 2019.

Patients: ANA survey respondents diagnosed with sporadic VS.

Main Outcome Measures: ANA survey respondent participation by state and United States geographical region; regional variation in treatment approach following diagnosis.

Results: A total of 878 patients met inclusion criteria, 67% of whom were female. The majority of respondents were white (n = 825, 94%). The largest age group represented was those aged 61–70 years (n = 317, 36%), followed by 51–60 (n = 241, 27%) and 71–80 (n = 135, 15%). 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). Mississippi (0.03), Hawaii (0.07), and Rhode Island (0.09) harbored the lowest participation rates. By region, the Northeast had the largest average number of ANA patients per 100,000 persons (mean = 0.38, SD =.19), whereas the West had the lowest (mean = 0.21, SD = 0.09). 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). Similarly, a significant variation in the utilization of radiosurgery exists across the United States, with seven states averaging similarly high rates of radiosurgery at 14% of ANA survey respondents (range, 11–17) compared with 13 states with the lowest reported radiosurgery rates (average, 0%; range: 0–0) (p < 0.001).

Conclusions: Large regional variation exists surrounding patient participation in the ANA across the United States, with some states exhibiting over 10 times higher participation rates than low participation states. Similarly, significant treatment variation exists across the United States in the management of sporadic VS. Together, these data demonstrate geographic disparities in access to patient support services and regional provider bias toward treatment across the United States.