NF2-related Schwannomatosis
Conditions
Keywords
NF2-SWN, Hearing Loss, Auto-captioning glasses, Augmented Reality, NF2, Neurofibromatosis Type II, Neurofibromatosis Type 2
Brief summary
The goal of this clinical trial is to investigate the usability of auto-captioning glasses for adults diagnosed with NF2-related schwannomatosis and loss of hearing. The primary objective of the study is to determine the feasibility and acceptability of auto-captioning glasses in this population. Participants will be asked to: * Use the glasses at their discretion for 12 weeks * Report their feedback at 3 and 12 week timepoints via online surveys and remote qualitative interviews
Detailed description
Patients with NF2-related schwannomatosis (NF2-SWN) often experience progressive hearing loss. The nature of their hearing loss frequently hinders the use of surgical or drug interventions. Due to this, assistive hearing technology such as speech to text machines are commonplace in this population. New technology such as augmented reality (AR) auto-captioning glasses are gaining popularity among deafened and hard of hearing participants for their ability to overlay live captions onto see-through lenses. The goal of this study is to investigate the feasibility and acceptability of this technology in the NF2-SWN population. The investigators aim to achieve this goal by recruiting up to 20 adult participants with a diagnosis of NF2-SWN and a history of hearing loss to a single-arm, open pilot study. The participants will be provided with a pair of Captify auto-captioning glasses to use over a period of 12 weeks. The investigators will assess participant's use of and feedback of the device at a 3-week timepoint and at study completion. At baseline, the investigators will enroll participants and obtain informed consent to participate. Patient background information will be collected at baseline alongside a short qualitative interview. After three weeks, participants will complete select patient-reported questionnaires to assess their feedback. After 12 weeks, the participants will again perform final surveys and follow-up interview, and return the glasses to clinic.
Interventions
DEVICEAuto-captioning Glasses
Augmented reality glasses that overlay real time captioning on see-through lenses, allowing users to read what is being said out loud.
Sponsors
Massachusetts General Hospital
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
OTHER
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Diagnosis of NF2-SWN by 2022 revised criteria * Age 18 years or older at time of consent * Willing and able to sign informed consent * Access to a mobile phone with current operating software (i.e., iOS 16+ or Android 12+) and an internet connection * Does not require prescription glasses to communicate others (e.g. may use reading glasses or similar) * Resident of the U.S. * English-speaking
Exclusion criteria
* Current use of auto-captioning glasses
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| System Usability Scale | 12 Weeks | Used to assess the usability of the auto-captioning glasses, scored from 0-100, with higher scores indicating higher usability. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Modified Telehealth Usability Questionnaire (Satisfaction and Future Use Sub-scale) | 12 Weeks | Used to measure user satisfaction with the intervention, with individual items scored on a scale of 1-7 where higher numbers are more satisfactory; total score is an average of each item in the sub-scale |
| Self-Reported Device Use | 12 Weeks | Participants will be asked whether they have used the device in the prior week, we will report the frequency (n) and percentage (%) of participants who report positively. |
Countries
United States
Contacts
PRINCIPAL_INVESTIGATORVanessa Merker, PhD
Massachusetts General Hospital
Outcome results
None listed