Identifying barriers and considerations for cochlear implantation in Amish children

Objective: To determine if barriers to cochlear implantation (CI) exist with respect to Amish children and to describe unique considerations associated with CI and subsequent otologic care in the Amish population.

Methods: Out of all patients who underwent CI at a tertiary care pediatric hospital from 2008 to 2019, Amish children were age-matched to the remainder of the cohort to compare demographics and care-related metrics including etiology of hearing loss, age at time of initial hearing-related appointment and at CI, total number of pre- and post-operative audiologic and otologic appointments, and post-operative complications. Social considerations that may pose barriers to care were collected for descriptive analysis.

Results: Since 2008, 232 children underwent CI, of which 8 implants were performed on Amish children. Six (75%) Amish children underwent newborn hearing screening and 3(38%) were found to have syndromic etiology for hearing loss. While Amish patients had a lower number of both audiologic (15 vs 33.5, p<.001) and otologic (4.5 vs 8.5, p=.028) appointments when compared to age-matched controls, median age at the time of implantation for the whole sample was not different between groups (2.5 vs 2.0 years, p=.211). From a social standpoint, limitations in transportation, telephone communication, and ability to recharge processor batteries must be considered in the Amish population.

Conclusion: Amish children undergoing CI face unique barriers to care including transportation and technologic limitations, leading to overall fewer hearing-related appointments when compared to an age-matched cohort. Understanding societal differences is important to facilitate optimal care for Amish children with hearing loss.