Decision Making for Active Surveillance in Vestibular Schwannoma

Abstract

Objective: To describe the experiences of patients who elected for the active surveillance treatment option for their vestibular schwannoma (VS).

Study design: Twenty-two patients participated in semistructured patient interviews.

Setting: Interviews were conducted between March and April 2021 via telephone with audio recordings and notes taken during each interview.

Patients: Adults diagnosed with a VS and at any point after their diagnosis underwent a period of active surveillance were recruited based on the diagnosis made by MRI. Patients were excluded if they chose to undergo treatment immediately, had a diagnosis of neurofibromatosis type 2, or if they had a confirmed alternative diagnosis.

Intervention: This intervention was a qualitative interview to assess patient experiences with their VS treatment decision.

Main outcome measures: Identifying abstract categories that represent many of the stories told by the participants that produces a theory grounded in the data with explanatory power.

Results: Factors that influenced patients' treatment decisions were perceived physician bias, selfeducation, and personal accounts of VS patients through support groups, and side effects/complications of the various treatment options.

Conclusion: Patients who opted for active surveillance as a treatment option reported high satisfaction with their decision and greater confidence in future treatments that would be necessary based on tumor growth. Future work should be done to increase shared decision making between the physician and patient to arrive at a treatment plan that aligns with their goals of care as well as potentially reducing overtreatment of VS.

FIG. 1.

Flowchart of patient recruitment.

FIG. 2.

The major domains of experience of the participants who elected to undergo a period of active observation.

FIG. 3.

Major themes of the informed decision-making process.