Development and Validation of a Decision Aid for Newly Diagnosed Vestibular Schwannoma Patients

Background: Lack of information is the foremost barrier for patients facing treatment decisions on vestibular schwannomas (VS). The goal of this study was to build a decision aid (DA) for newly diagnosed VS patients.

Design and Setting: Instrument Development and Randomized Control Trial (RCT), 2022–2023, 6-week follow-up, tertiary-care center, and Acoustic Neuroma Association (ANA).

Participants: Inclusion criteria: diagnosis of VS in the past 12 months, not having a diagnosis of neurofibromatosis type 2 (NF2), and not having decided on their VS treatment.

Intervention(s) The 15 items on the DA were identified through virtual focus groups of VS patients, discussion with treating physicians, and literature review. Subjects completed initial questionnaires and were randomized into groups consisting of the DA and a fact sheet from the National Institute on Deafness and Other Communication Disorders (NIDCD) on VS, or a control group that received only the fact sheet.

Main Outcome(s)/Measure(s): Difference in Decisional Conflict Scale (DCS) between Time 1 and Time 2 was the primary outcome measure.

Hypothesis: Use of the DA will reduce decisional conflict.

Results: A total of 77 subjects were screened, 58 (75%) were enrolled; 29 were randomized to DA group and 29 to control group. 50.9% between the ages of 18 and 59, 36.4% between the ages of 60 and 69, and 12.7% were 70 years and older. 80% of subjects were female of white/Caucasian race (96.4%), and married/in a domestic partnership (69.1%). 52.7% earned a Master’s/Doctorate degree. Median DCS at Time 1 for the DA group was 1.81 (range: 1.00–3.00) and that of control group was 1.88 (range: 0.69–3.19). Median ΔDCS (ΔDCS = DCS Time 1 – DCS Time 2) in DA group; 0.91 (range: −0.50 to 2.06), in control group; 0.56 (range: −0.63 to 2.06). In the DA group, 46.4% of individuals had a DCS Time 2 ≤ 1 as compared to 33.3% in the control group. There was a 51.9% increase in subjects achieving low decisional conflict in the DA group as compared to the control group. Subjects also shared numerous positive testimonials from their use of the DA ([Figs. 1]–[3]).

Conclusions and Relevance: The use of the VS DA at the time of making a treatment decision showed a clinically meaningful difference in reducing decisional conflict, and subjective patient satisfaction with use and their decision. This study is relevant because no one has performed an RCT of the use of DA in VS patients.

Fig. 1

Publication History

Article published online:
05 February 2024