RESUMEN
The COVID-19 pandemic dramatically changed health service delivery with vulnerable patients advised to isolate and appointments provided virtually. This change affected recruitment into an observational cohort study, undertaken at a single site, where participants with mitochondrial disorders were due to have specialist hospital-based audiovestibular tests. To ensure study viability, the study protocol was amended to allow home-based assessment for vulnerable participants. Here, we report outcomes of an online survey of participants who underwent home-based assessment, related to the experience, perceived benefits, and drawbacks of home audiovestibular assessments. Seventeen participants underwent home-based neuro-otological assessment, due to the need to isolate during COVID-19. Following the assessment, 16 out of 17 participants completed an anonymised online survey to share their experiences of the specialist home-based assessment. One hundred percent of participants rated the home-based assessment 'very positively' and would recommend it to others. Sixty-three percent rated it better than attending hospital outpatient testing settings. The benefits included no travel burden (27%) and reduced stress (13%). A majority reported no drawbacks in having the home visit. The patient-reported feedback suggests a person-centred approach where audiovestibular assessments are conducted in their homes is feasible for patients, acceptable and seen as beneficial to a vulnerable group of patients.
RESUMEN
BACKGROUND AND PURPOSE: Identifying vestibular causes of dizziness and unsteadiness in multi-sensory neurological disease can be challenging, with problems typically attributed to central or peripheral nerve involvement. Acknowledging vestibular dysfunction as part of the presentation provides an opportunity to access targeted vestibular rehabilitation, for which extensive evidence exists. A diagnostic framework was developed and validated to detect vestibular dysfunction, benign paroxysmal positional vertigo or vestibular migraine. The specificity and sensitivity of the diagnostic framework was tested in patients with primary mitochondrial disease. METHODS: Adults with a confirmed diagnosis of primary mitochondrial disease were consented, between September 2020 and February 2022. Participants with and without dizziness or unsteadiness underwent remote physiotherapy assessment and had in-person detailed neuro-otological assessment. The six framework question responses were compared against objective neuro-otological assessment or medical notes. The output was binary, with sensitivity and specificity calculated. RESULTS: Seventy-four adults completed the study: age range 20-81 years (mean 48 years, ±SD 15.05 years); ratio 2:1 female to male. The framework identified a vestibular diagnosis in 35 participants, with seven having two diagnoses. The framework was able to identify vestibular diagnoses in adults with primary mitochondrial disease, with a moderate (40-59) to very high (90-100) sensitivity and positive predictive value, and moderate to high (60-74) to very high (90-100) specificity and negative predictive value. CONCLUSIONS: Overall, the clinical framework identified common vestibular diagnoses with a moderate to very high specificity and sensitivity. This presents an opportunity for patients to access effective treatment in a timely manner, to reduce falls and improve quality of life.