Objectives: Patient expectations are a critical factor in determining cochlear implant (CI) candidacy. However, minimal data are available on how potential CI recipients develop their expectations and if expectations can be modified by providers. In addition, there is little insight into the resources patients use to inform their decision to undergo implantation. This project aims to assess (1) the role of the CI evaluation (CIE) process on patients' expectations, (2) the extent to which patients' pre-CI outcome expectations can be modified, (3) the information patients use to inform their expectations, and patients' preferences for the discussion/display of potential CI outcomes.
Design: Prospective mixed methods study of 32 adult CI patients undergoing CIEs. Outcome measures included: pre-CI Cochlear Implant Quality of Life-35 Profile scores (CIQOL-35 Profile); pre-CIE/post-CIE/day of surgery CIQOL-Expectations scores; post-CIE/day of surgery Decisional Conflict Scale (DCS) scores; and pre-CI aided CNC-word and AzBio sentence scores. Thematic analyses of key informant interviews with 19 potential CI recipients were also performed.
Results: In aim 1, CI CIQOL-Expectation domain scores remained essentially unchanged following the CIE when averaged across all participants (d = 0.01 to 0.17). However, changes in expectations were observed for many participants at the individual level. Regarding the second aim, participants with higher pre-CIE expectations showed a decrease in expectations following the CIE for all CIQOL domains except emotional and social (d = -0.27 to -0.77). In contrast, the only significant change in participants with lower expectations was an increase in expectations in the environment score from pre-CIE to the day of surgery (d = 0.76). Expectations remained essentially unchanged or continued to change in the same direction between the post-CIE and the day of surgery, narrowing the gap between participants with higher and lower expectations. Overall, participants demonstrated low overall conflict related to their decision to proceed with cochlear implantation (mean DCS of 11.4 post-CIE and 14.2 at time of surgery out of 100) but DCS scores were higher for participants with lower pre-CIE expectations (d = 0.71). In aim 3, key informant interviews demonstrated no differences between the low- and high expectation cohorts regarding resources used to develop their perception of CI outcomes. Potential CI recipients placed high value in talking with patients who had previously received a CI, and preferred discussing CI functional abilities via clinical vignettes described in the CIQOL Functional Staging System rather than by discussing speech recognition or CIQOL-35 Profile scores.
Conclusions: The results of the present study suggest that, although overall expectations averaged across the cohort remained essentially unchanged, individual participants' pre-CI expectations can be modified and there is value in measuring these expectations using the CIQOL-Expectations tool to determine if they are realistic. This information can then be utilized during personalized counseling to present a more accurate representation of likely CI outcomes for each patient. Discussions between potential CI recipients and current CI users may also provide valuable information to inform their expectations. In addition, communicating potential CI benefits using CIQOL functional stages and associated clinical vignettes may result in more realistic patient expectations and support shared decision-making related to CI surgery.
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