Understanding Public Perceptions Regarding Cochlear Implant Surgery in Adults

Abstract

Background and Objective:

Approximately 6% of adults eligible for cochlear implantation (CI) undergo surgery. This study aims to understand how general perceptions about CI contribute to barriers causing this low utilization rate.

Methods:

Participants completed an online survey regarding their perceptions about cochlear implantation. They were asked to rank CIQOL-10 Global priorities and corresponding risk tolerance for minor complications (changes in taste, vertigo) and major complications (infections requiring hospitalization, meningitis, reimplantation, facial paralysis, and cerebrospinal fluid [CSF] leak).

Results:

A total of 615 responses (female 55%, mean age 39 years [range 20–78]) were included. Respondents identified issues with insurance (46%) and fear of undergoing surgery (21%) as barriers preventing eligible adults from receiving CI. Regarding surgical risk, respondents significantly underestimated rates of minor complications (p < 0.0001) and almost all major complications (all p < 0.0001) while overestimating rates of serious infections and need for reimplantation (both p < 0.005). The ability to hear strangers in noisy environments was identified as the highest priority for CI (26%). Individuals who knew someone with a cochlear implantation were willing to tolerate higher rates of all minor and major complications (all p < 0.05). Healthcare workers were similarly willing to tolerate significantly higher rates of meningitis, facial paralysis, and CSF leak to achieve their highest priority (all p < 0.05).

Conclusions:

Respondents identify insurance coverage and fear of surgery as primary reasons for low utilization of adult CI in the United States. However, healthcare workers or those who knew someone with a cochlear implantation indicated significantly higher rates of risk tolerance to achieve their highest quality of life priorities, indicating the potential that the benefits of cochlear implantation are underappreciated in the general population.

INTRODUCTION

Improving hearing healthcare access in the United States has been an ongoing and recognized need. Early studies demonstrate a clear relationship between hearing loss and social isolation, resulting in lower quality of life measures and increased emotional handicap as well as improvements in these measures postimplantation (1). Further research has also correlated untreated hearing loss with higher healthcare costs, increased risks of hospitalization, and cognitive decline (2,3). However, despite these findings, cochlear implant utilization rates in the United States remains low at 6% (4).

Many previous studies have postulated various reasons for this trend, focusing on understanding the complexities in relation to motivators versus barriers in patients seeking care. This research has identified traditional barriers to access for cochlear implantation and factors affecting timing of implantation including low socioeconomic status and insurance coverage (4,5). Additional policy considerations have also included efforts for increasing general awareness of cochlear implant benefits and addressing hearing loss referral networks as well as political discussions with the Deaf community regarding pediatric implantation (6). However, to the best of our knowledge, there have been no studies that have directly assessed public opinions on cochlear implantation to understand their most pressing priorities with regard to postoperative quality of life and risk tolerance.

METHODS

Participants were recruited with Qualtrics surveys posted on the Amazon mTurk platform asking for their perceptions regarding cochlear implantation (CI). Survey respondents were paid $0.25 for their participation. Exclusion criteria included if they were younger than 18, did not live in the United States, or failed a validation question. This study was approved by the Johns Hopkins Institutional Review Board.

Survey

The Qualtrics survey began with a short introduction to a cochlear implantation, including a picture illustrating an individual with a cochlear implant. Questions regarding the participant’s perceptions about and willingness to pay for cochlear implantation were presented. In addition, participants were also informed only 6% of eligible adults receive cochlear implantation and asked to identify what they believed to be the most important contributor. To ensure active participant engagement with our survey, we implemented accuracy assessments throughout our survey. Participants who failed the accuracy checks were excluded. The full survey questionnaire is available in Appendix 1, http://links.lww.com/MAO/B390.

To understand participants’ perceptions regarding postcochlear implant benefits, participants were asked to rank the quality-of-life priorities of the CIQOL-10 Item Bank adapted from McRacken et al. (7). These 10 priorities were created as a validated method of global assessment of post-cochlear implantation benefits in the adult population. Participants ranked their most important priority as 1 and their least important as a 10. Individual’s priorities were then grouped into six subdomains (communication, emotional, entertainment, environment, listening effort, and social) according to McRacken et al. (7).

Survey participants were also asked about estimating actual rates of post-CI complication rates with regard to both minor and major complications. Minor complications included changes in taste and postoperative vertigo. Major complications included serious infections requiring hospitalization, meningitis, requirement of reimplantation surgery, facial paralysis, and cerebrospinal fluid (CSF) leak. Risks were presented incrementally from 200, 100, 50, 10, 5, and less than 5 in every 1,000 (20%, 10%, 5%, 1%, 0.5%, less than 0.5%, respectively). Respondents were also asked about acceptable level of risks for each of the major and minor complications to achieve their highest and lowest ranked priorities. For this study, percentage thresholds for risk were compared against conservative rates in the literature with a 5% complication rate for minor risks and 1% for major risks (8–12). For subgroup analysis, we compared estimated rates of both minor and major complications with those of the general population in our survey.

Analysis

Responses were recorded on the Qualtrics survey platform from February 2 to February 23, 2021 and analyzed with Stata 14.2 (College Station, TX). For statistical calculations, a significance value of 0.05 was used for both t tests and chi-squared analyses.

RESULTS

A total of 615 participants successfully completed the survey and were included in the analysis. The mean age of all respondents was 39 (SD 12.7) with 55% females. Full demographics are presented in Table 1.

TABLE 1.

Demographic characteristics of study participants

Characteristic	No. (%) of Participants (N = 615)
Age, mean (SD)	39 (12.7)
Sex
Female	335 (54.5)
Male	275 (44.7)
Nonbinary	3 (0.05)
Race
White	435 (70.7)
Black or African American	83 (13.5)
Asian	77 (12.5)
Hispanic/Latino	38 (6.2)
American Indian or Alaska Native	15 (2.4)
Native Hawaiian or Pacific Islander	2 (0.3)
Other	4 (0.7)
Highest level of educational attainment
Less than high school degree	2 (0.3)
High school or GED	63 (10.2)
Some college but no degree	91 (14.8)
Associate degree in college (2-year)	74 (12.0)
Bachelor’s degree in college (4-year)	260 (42.3)
Master’s degree	105 (17.1)
Doctoral/professional degrees	10 (1.6)
Annual household income
<25–50K	174 (28.3)
50K-75	137 (22.3)
75–100K	101 (16.4)
100–150K	72 (11.7)
150–200K	26 (4.2)
>200K	17 (2.8)
Prior surgical history
Prior surgery	342 (55.6)
No prior surgery	273 (44.4)
Experience in healthcare
Previous or current healthcare worker	165 (26.8)
No previous experience in healthcare	450 (73.2)
Personal knowledge of someone with a CI
Does have personal knowledge	164 (26.7)
Does not have personal knowledge	451 (73.3)

CI indicates cochlear implant; GED, General Educational Development.

Of the survey respondents, only 6.8% of respondents correctly identified that the internal component of a cochlear implant (CI) does not need to ever be changed, with 73% believing that the internal component required removal every 3 to 5 years for maintenance. Respondents were also presented with the data illustrating that only 6% of eligible adults receive a CI. When asked for primary contributors to this, 46% of respondents believed it was due to issues with insurance coverage, with fear of undergoing surgery (21%) and lack of awareness for the benefits of CI (11%) being the next most common barriers identified.

Motivators for CI

The most important priorities identified by participants were the ability to “easily have conversations with strangers in noisy environments,” “socialize with friends, relative, and neighbors,” and “feel comfortable being myself in daily interactions with my peers”(Table 2). Chi-squared analyses demonstrate age and gender each to be significant predictors for the most important priority (both p = 0.001).

TABLE 2.

Most important ranked priorities, adapted from CIQOL-10^a

Most Important Priority	Domaina	No. (%) of Participants
I am able to easily have conversations with strangers in noisy environments	Listening effort	109 (17.7)
I am able to socialize with friends, relatives, and neighbors	Social	93 (15.1)
I feel comfortable being myself in daily interactions with my peers	Emotional	82 (13.3)
I can hear someone approach from behind me	Environment	64 (10.4)
I can comfortably hear and understand people in conversations without looking	Communication	52 (8.5)
I can easily understand strangers without lipreading in noisy places	Communication	51 (8.3)
I can follow conversations with minimal effort	Listening effort	49 (8.0)
I can enjoy television, radio, and music	Entertainment	42 (6.8)
I am able to have conversations in quiet environments without asking for people	Communication	41 (6.7)
to repeat themselves
I am comfortable having conversations without fear of saying the wrong thing	Emotional	32 (5.2)

^aPriorities grouped by McRacken et al. (7) into 6 QOL domains (communication, emotional, entertainment, environment, listening effort, and social).

Acceptable Risk Tolerance

Using the assumed risks of major and minor complications, respondents significantly underestimated actual rates for all minor risks (change in taste, p < 0.0001; vertigo, p < 0.0001). Respondents also significantly underestimated most major risks (meningitis, facial paralysis, cerebrospinal fluid [CSF] leak; all p < 0.0001). However, survey respondents did overestimate rates of serious infections requiring hospitalizations and need for surgical reoperation (p = 0.002, p < 0.0001 respectively, data presented in Table 3).

TABLE 3.

The general population’s estimations of postoperative complication rates and maximum risk tolerance to achieve top quality-of-life priorities

	Estimates of Actual Ratesa		Maximum Risk Toleranceb
Postoperative Complication	Over- or Underestimated	P	Willing to Tolerate?c	P
Minor complications
Changes in taste	Underestimated	<0.001**	No	<0.001**
Vertigo	Underestimated	<0.001**	No	<0.001**
Major complications
Serious infection requiring hospitalization	Overestimated	<0.001**	Yes	=0.053
Meningitis	Underestimated	=0.002**	No	<0.001**
Reoperation	Overestimated	<0.001**	No	=0.001**
Facial paralysis	Underestimated	<0.001**	No	<0.001**
Cerebrospinal fluid leak	Underestimated	<0.001**	No	<0.001**

Estimates of postoperative complications and maximum risk tolerance were compared to standard rates in the literature (5% for minor complications and 1% for major complications). Statistical significance determined as p < 0.05.

^aEstimates of actual postoperative complication rates were compared to a standard 5% rate for minor complications and a 1% rate of major complications.

^bMaximum risk tolerance: tolerance to achieve top quality-of-life priority.

^cWillingness to tolerate: maximum risk tolerance for postoperative complications were compared to a standard 5% rate for minor complications and a 1% rate of major complications.

^**Statistically significant.

To achieve their top priority, respondents would still not be willing to tolerate either a 5% rate of the minor complications nor 1% complication rate of meningitis, facial paralysis, or CSF leak (all p < 0.001). For risk tolerance for serious infection or reimplantation, respondents indicated they were willing to tolerate a 1% complication rate, but not significantly more (p = 0.5, p = 0.45, respectively).

Two demographic variables demonstrated significantly higher rates of risk tolerance for CI: healthcare workers and those who had personal knowledge of someone with a CI (p-values displayed in Table 4). For healthcare workers, univariate analysis demonstrates they were willing to tolerate significantly higher rates of major complications such as meningitis, facial paralysis, and CSF leak to achieve their most important priority despite estimating similar rates of all complication (p = 0.004, p = 0.04, p = 0.017, respectively). For survey respondents who had personal knowledge of someone with a CI, they were willing to tolerate significantly higher rates of all major and minor risks (all p < 0.05). However, this population also significantly estimated higher rates of all major and minor complications except need for reoperation (all p < 0.05). There was no significant different in risk tolerance between individuals who believed fear of surgery was the primary contributor to low utilization rates for either major or minor complication rates (all p > 0.05).

TABLE 4.

Chi-squared analysis significance values comparing actual and maximal risk tolerance for postoperative complications within subgroups to achieve top quality-of-life priority

	Healthcare Professionals vs. the General Population		Individuals with Personal Knowledge of Someone with a CI vs. the General Population
Postoperative Complication	Comparing Estimates of Actual Rates (p)	Comparing Maximum Risk Tolerancea (p)	Comparing Estimates of Actual Rates (p)	Comparing Maximum Risk Tolerancea (p)
Minor complications
Changes in taste	0.1	0.95	0.005**	0.03**
Vertigo	0.07	0.09	0.03**	0.001**
Major complications
Serious infection requiring hospitalization	0.2	0.05	0.001**	<0.001**
Meningitis	0.5	0.004**	0.024**	<0.001**
Reoperation	0.5	0.1	0.8	<0.001**
Facial paralysis	0.09	0.04**	0.004**	<0.001**
Cerebrospinal fluid leak	0.06	0.02**	0.012**	<0.001**

All values presented in the table are p-values in comparison to the general population estimations, with statistical significance determined as p <0.05).

^aMaximum risk tolerance: tolerance to achieve top quality-of-life priority.

^**Statistically significant.

Willingness to Pay

Thirty-two percent stated that having a visible external component of their CI mattered “significantly” but did not have significantly higher willingness to pay (WTP) for a device without an external component compared to their peers (p > 0.05). When asked how much participants were willing to pay out of pocket for a CI if they were eligible, 52% responded they would be willing to pay $50,000 or more. Females and those with higher incomes were willing to pay more for a CI regardless if it had an external component or not (all p < 0.01), although only those with higher income were willing to pay significantly more if it meant they could avoid surgery.

DISCUSSION

One of the primary goals of this study was to determine the role of public perception in influencing the low utilization rates of cochlear implantation (CI) in the United States. Previous studies have discussed these factors to be multifactorial in nature (4,6,13–15). In this study, we focus on assessing both audiological and nonaudiological barriers that our survey respondents identified as top contributors to low CI utilization rates. In the former, audiological features primarily included the impact of hearing loss on daily activities, assessed by our survey via the CIQOL-10 item bank, in motivating patients to seeking care (7). In the latter, we focus our discussion on the literature surrounding issues our population identified as primarily contributing to the low utilization rates: insurance coverage and risk of surgical complications.

Audiological Considerations

Multiple articles have focused on the lack of awareness regarding the benefits CI provide in significantly improving an individual’s life, which was similarly identified as one of the top contributors to low CI utilization by our survey respondents. As previously discussed, existing literature has demonstrated a clear association between untreated hearing loss associated cognitive decline in the older adult population (1–3). In addition, studies demonstrate individuals who seek care and have highest compliance with hearing amplification recommendations are often those with higher handicaps perceived at baseline (6).

Our data demonstrates similar findings, as top priorities ranked by respondents focus around an individual’s ability to listen and interact socially with their peers. This indicates that the public is aware through personal or anecdotal experience of the connection between hearing loss and social isolation. However, at the same time, respondents also indicate no significant differences in their willingness to tolerate complications associated with cochlear implantation to achieve their highest priorities. This demonstrates the potential lack of awareness regarding the significant improvement seen in postimplantation outcomes (16–18). These findings also raise concerns that without fully appreciating these postimplantation benefits, older adults may be more reluctant to seek additional care for their hearing loss. This is especially compounded with the existing stigma described in the literature that this population associates hearing amplification with ageism and disability (6).

Risk Tolerance for Surgical Complications

Another primary concern that was most frequently identified to be a limiting factor in CI utilization was concern for undergoing a surgical procedure. In addition, survey respondents also significantly underestimated most major and minor complication rates after cochlear implantation when compared to conservative estimates in the literature, indicating an overall low risk tolerance for surgical complication. This is consistent with the decision-making literature regarding pediatric CI, as parents hesitant to proceed with CI often cite concerns regarding surgical interventions for nonlife-threatening conditions (19).

However, at the same time, our data demonstrates two important groups that we see significantly higher risk tolerance for postoperative complication rates to achieve important quality-of-life priorities: healthcare workers and participants who have personal knowledge of someone with a cochlear implant. These are the two most likely populations captured in our survey that would have the most familiarity, whether personal or professional, with the balance of CI benefits versus risk. Therefore, we believe this discrepancy demonstrates a likely under-appreciation for the quality-of-life improvements in the postoperative period, further supporting the discussion above regarding the lack of awareness regarding CI benefits. This is further demonstrated in the higher risk tolerance that healthcare workers have despite estimating actual complication rates similar to the rest of the survey respondents.

Insurance Coverage

Survey respondents indicated they believed issues with insurance coverage to be the most important contributor to low CI utilization rates. There are multiple insurance issues with cochlear implantation and its reimbursement that contribute to decreased cochlear implant penetrance, which can range from difficulty of preapproval to relatively arbitrary audiometric cut-offs for Medicaid criteria on a state-to-state basis (4,13,14). Given that some Medicaid programs cover less than 10% of the actual device costs, hospitals in regions with large numbers of Medicaid patients have struggled with the associated financial losses (13,14). This has further served to exacerbate limitations in access for cochlear implantation. These issues were identified by our respondents to be the most frequent contributor to low CI utilization rates, indicating a need for both improving financial access and designing more efficient models of care to address these concerns.

Limitations

We believe the results of our study offer insight into how the general public’s perceptions about cochlear implantation may contribute to the low rates of cochlear implantation. However, we recognize limitations to our findings, including that an individual respondent’s own experience with hearing loss may substantially change their priorities and risk tolerance and vary from the general public. Future formal studies in clinical settings may also provide important perspectives from patients eligible for CI for better guidance for clinical consultations. Another limitation of our study is with regard to an individual participant’s understanding of cochlear implantation. While efforts were made with this study to include a primer for increasing respondent’s baseline knowledge, future studies could include more resources regarding cochlear implantation for participants who indicate they would like more information to better make a decision about priorities and risk tolerance. Lastly, the questionnaire was distributed via an online platform with public access that captured public perspectives in a cross-sectional manner and thus we must consider the potential for selection bias and generalizability of our results. However, given the large number of patients we were able to recruit and diversity present in our demographics, along with additional steps described in our methods for ensuring accuracy and attention checks, we are confident our results accurately reflect the perceptions of the general population.

CONCLUSIONS

Our findings demonstrate the potential for reframing discussions in clinical settings with individuals eligible for CI to focus on increasing awareness of cochlear implantation benefits in line with patient priorities. This is further supported by our data demonstrating healthcare professionals and those with personal knowledge of someone with a cochlear implant to be two populations with significantly higher risk tolerance than their peers. We also hope these findings will begin to provide avenues for increasing public education discussions to destigmatize hearing amplification and cochlear implantation, especially in the older adult population, and increase existing low utilization rates.