Update on Barriers to CI Uptake in Adults

Jonathan D. Neukam, AuD, Ansley J. Kunnath, BA, Ankita Patro, MD, René H. Gifford, PhD, David S. Haynes, MD, Janice J. Chung, MD, Aaron C. Moberly, MD, and Terrin N. Tamati, PhD, on behalf of the Implantable Hearing Devices Committee

The field of adult cochlear implantation has seen significant advancements over the last two decades, including the approval of cochlear implants (CIs) by the United States Food & Drug Administration (FDA) for single-sided deafness (SSD) in 2019 [approval P000025/S104], implementation of electroacoustic stimulation for preserved low-frequency hearing, remote programming capabilities, magnetic resonance image (MRI) compatibility, and expanded eligibility criteria by the Centers for Medicare & Medicaid Services.¹ Nonetheless, only 2%–13% of eligible adults in the United States receive a CI.^2,3 This stark contrast highlights an urgent need to understand and address the barriers preventing broader adoption of CIs. 

Although the barriers to hearing aid (HA) uptake are well documented,⁴ cochlear implantation presents unique challenges, such as concerns for lack of insurance reimbursement or out-of-pocket expenses, surgical considerations, and potentially greater uncertainty of outcome for surgical intervention. A thorough review of adult and pediatric barriers to cochlear implantation was written over 10 years ago, followed by a few opinion articles in recent years.^5,6,7,8 This leaves a gap in our evidence base of up-to-date barriers to CI uptake.

Here, we provide an update on adult CI uptake barriers, based on our recent scoping review (in press). We utilize an ecological framework^9,10,11 for the study of health behavior to organize barriers to CI uptake into multiple domains, including policy, societal, organizational, and individual barriers. We also propose strategies to improve access and outcomes for adults who could benefit from this transformative technology.

Policy and Structural Barriers

In the United States, non-Caucasians pursue CIs at lower rates despite qualifying for CIs more often. Furthermore, individual CI center cohorts across the United States do not represent the racial and ethnic distribution of their regions.^{12,13,14,15,6,16,17} Lower socioeconomic status (SES) and education level are related to lower CI uptake.^18,19,20,21 As a field, we are disproportionately implanting more Caucasian patients and those from higher SES than any other groups. This is a complex problem that may be related to community healthcare access and SES, which are likely intertwined with race and ethnicity. 

Globally, in countries with single-payer systems or universal healthcare (e.g. Australia, United Kingdom, Canada), financial budgets often restrict the number of CIs that can be performed, and country-specific eligibility criteria can also inhibit cochlear implantation.^{22,23,24,25,26,27,28} Despite having universal healthcare, countries such as Australia still find disparities among socioeconomic groups, suggesting that this barrier extends beyond insurance coverage to factors including the cost of travel to CI centers and/or the impact of surgery on attending work.²⁹ 

Additionally, sociodemographic and racial underrepresentation creates biases in CI clinical research, impeding the generalization of rehabilitation studies to the general population. This issue further emphasizes the need for more research into the specific barriers faced by minority populations and patients from low socioeconomic backgrounds and the development of culturally competent solutions to ensure equitable access to CIs.³⁰

Societal Barriers

Persistent misconceptions and a general lack of awareness about CIs present additional societal barriers to uptake. An examination of the public’s knowledge of CIs revealed common beliefs such as fully implantable CIs³¹ or the necessity for replacement of internal components every three to five years.³² These misconceptions may stem from reliance on the internet for knowledge rather than healthcare professionals^29,33,31 Moreover, online information providing CI education was found to be written above a sixth-grade reading level, which is the recommended reading level by the American Medical Association.^34,35 Educational materials like YouTube videos were often without the subtitles or interpreter services needed to be understood by individuals with hearing loss.³⁶ Only 12% of the general population was found to be aware of CIs.³⁷ Awareness is notably higher among young adults and Caucasian individuals, reflecting disparities in knowledge across demographic groups. 

Organizational Barriers

At the organizational level, inconsistent referral criteria, challenges in candidate identification, and lack of professional resources are barriers to CI uptake. These issues may arise from a lack of professional resources, a limited number of CI centers in a region, or centers with audiologists who are not trained in CI programming. Inconsistent referral criteria have been reported by audiologists, as well as a lack of awareness among non-audiology professionals.^{38,39,40,41,42,30,43,32} A lack of referral from hearing healthcare and non-hearing healthcare professionals is one of the largest barriers to CI uptake. This issue may arise from audiologists not appropriately referring patients for a CI evaluation when a HA no longer provides sufficient benefit.⁴⁴ One challenge is that aided speech recognition testing is not a standard test performed outside of the CI evaluation, which may be due to a lack of booth space, equipment, or appointment time for aided testing. Even if aided speech recognition testing is performed, some audiologists may not be trained on current expanded CI eligibility criteria which can include greater degrees of asymmetry between ears. Lack of testing materials, including speech recognition materials that have been developed for patients’ primary languages, can also result in the inability to test aided-speech perception, delaying the referral process, especially in minority populations.²⁴

Lack of referrals also arises from other healthcare professionals. For example, most appointments with physicians occur face-to-face in a quiet room with visual cues, which can limit awareness of a patient’s degree of hearing loss.⁶ Thus, primary physicians may not screen for hearing loss issues as part of routine care, with insufficient evidence published that hearing screening is beneficial in adults who do not explicitly self-report hearing loss. Additionally, self-reporting of hearing loss is not a reliable indicator of actual hearing deficits.¹² Lastly, some healthcare professionals may be unaware of expanded eligibility criteria for patients with less severe degrees of hearing loss or single-sided/asymmetric hearing loss.

Patients in rural areas face additional challenges accessing CI services due to the concentration of CI centers in urban areas.^{39,25,45,2,43} Although distance to CI centers has not been consistently identified as a barrier, patients who reside in rural areas must often travel longer distances to CI centers, leading to logistical difficulties such as time, cost, and transportation constraints.^45,2,19 While some CI centers are optimizing patient travel time with same-day surgeries^44,46 and overcoming fear of surgical complications by the use of local anesthetic,⁴⁷ these options are not yet widely available. The recent rollout of remote programming options by some CI manufacturers may help to reduce travel burdens and improve access for rural populations. These advances may also foster avenues to bring CI technology to third-world nations where very little is known about CI uptake. 

Interpersonal and Individual Barriers

At the patient level, barriers exist that are both interpersonal and individual. Marital status and living context (i.e., living alone versus living with another person) predict CI uptake, suggesting that a lack of strong social support systems may be a barrier.^38,40,48,16 Establishing a network of existing CI recipients to answer questions and share experiences can positively impact CI pursuit.^49,42 Additional individual barriers to CI uptake are strongly related to a patient’s values, beliefs, and fears. The potential risks of surgery and the inability to accurately predict postoperative hearing outcomes (such as speech recognition, sound quality, and preservation of residual hearing) based on preoperative evaluations pose significant decision-making challenges for CI candidates.^50,49 Factors such as the self-perceived degree of hearing loss, experiences of hearing difficulty, social stigma associated with hearing loss, and aesthetic concerns further contribute to the limited uptake of CIs.^42,26,28 Older age has also been found to play a negative role in the decision to pursue a CI.^13,40,51

Summary and Future Directions

Despite the repeatedly demonstrated efficacy of CIs for patients with moderate-to-profound sensorineural hearing loss, as well as the ever-expanding indications of CIs to include individuals with SSD and asymmetric hearing losses, utilization rates of CIs remain low. Many adults have lingering trepidation and, on average, wait 24 to 30 years with hearing loss before cochlear implantation.^13,39 Unfortunately, longer durations of deafness have been associated with worse speech recognition outcomes after cochlear implantation, underscoring the importance of early detection and intervention.^52,53,54

Although the founding of the American Cochlear Implant Alliance has helped, there is still a significant need for CI advocacy and education. Social media has allowed CI users from diverse backgrounds and geographies to connect with others, but these avenues may be more popular amongst younger generations or those with greater technology access. Awareness campaigns have been used to increase CI awareness but with suboptimal results.⁵⁵ Furthermore, CI information available on the internet may not be at an appropriate reading level.^56,57 Improved use of social media to promote CI awareness, coupled with the formation of networks for existing CI recipients to share personal experiences, could help educate potential CI recipients and positively influence decision-making.

Recently, CI visibility has increased in film and television, which may also increase awareness among the general population. However, this could result in mixed attitudes and beliefs. For example, the 2019 film Sound of Metal portrayed CIs in a negative light by giving inaccurate information that the surgery is not covered by insurance. In contrast, Toy Story 4 (2019) demonstrated a pediatric CI user in a positive light. In A Quiet Place (2018), the use of a CI in combination with sign language brought to light the utility of CIs within different linguistic and cultural settings. Another undoubtedly impactful project was the 2020 release of an American Girl doll who is a CI recipient. 

An enormous research gap worth highlighting is the disparity in CI utilization among racial and ethnic minority groups. In the United States, this population includes African American, Hispanic, Asian, or any non-Caucasian patients. However, because of the immense size of the country and variability across regions, minority health behavior may present itself differently depending on the area.⁵⁸ Even less is known about rural and low SES populations who may or may not overlap with these minority profiles. Rural and remote communities often suffer from limited health resources.⁵⁹ In addition, minority populations also include indigenous persons, cultural immigrants, religious minorities, and the LGBTQIA+ community. It is unknown how these populations are being served, but collecting thorough sociocultural data during patient intake may help clinicians identify key structural, interpersonal, and individual barriers.⁶⁰ Incorporating these data into our research studies will help us gain a more nuanced understanding of these unique populations and promote culturally competent hearing health care overall. 

Untreated hearing loss is associated with numerous adverse outcomes, including increased social isolation, loneliness, depression, risks to personal safety, and cognitive decline.^61,62,63,64 Ultimately, the goal of hearing healthcare initiatives aimed at increasing CI access and uptake is to improve the quality of life for all individuals who could benefit from this technology. By identifying barriers and organizing them into an ecological framework, targeted interventions can be developed and implemented to overcome these challenges, ultimately optimizing communication outcomes for all who could benefit from this life-changing intervention.

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