Cochlear Implant Users Describe Need for Lifelong Services

Adult cochlear implant (CI) users from 40 countries recently responded to a first-of-its-kind survey about their implant journeys. Over 1,000 respondents (ages 18-90 years) took the time to share their experiences with post-implant care and aural rehabilitation. The 34-item survey was a joint project for York University in Toronto, Canada, and the Cochlear Implant International Community of Action (CIICA); it was translated into six languages, designed with CI user input1, and supported by a grant from the Social Sciences and Humanities Research Council, Canada. A complete summary of survey results2 can be found at CIICA’s website (link provided at the end of this article). Highlighted here are data points relevant to CI rehabilitation and users’ call for attention to short- and long-term, or lifelong, CI services. CI USERS WEIGH IN Respondents had the option to omit questions, so response rates varied. For instance, the vast majority of respondents (96%, n = 880 of 918) were satisfied or very satisfied with their devices. On the other hand, respondents indicated that experiences with post-surgical services were not as positive: among those who addressed this issue, 32% (n = 297 of 930) rated the amount of their rehab services as “not enough,” and 27% (n = 264 of 977) indicated receiving no rehab services at all. If a disconnect exists between clinic and patient perceptions, one explanation might be that services and rehabilitation can be viewed differently by different constituencies. For example, audiology organizations develop necessary clinical guidelines based on available evidence and best practices;3 and clinical programs conduct essential value analyses to measure cost-effectiveness, timely delivery of service, consumer satisfaction, and more.4 By definition, these processes are designed by and for providers, not patients.5 To date, there has been minimal evidence of the patient’s voice regarding their preferred CI aftercare.6 For example, an earlier survey indicated that patients’ experiences with implant services were mainly driven by decisions made by their implant team;7 another study found that patients had not been given the opportunity to set their own goals or benchmarks.8 Tellingly, in the latter study, the questionnaire used to interview patients about their rehabilitation was developed by researchers with no input from patients—even as patients consistently indicate their preference to be involved in research and care plans.9–12 In comparison, the CIICA survey actively invited “lived experience” input, including CI users in its design and development. From the CIICA report: “...Responses conveyed insights into how [rehabilitation services] should be delivered and what they should include. There were comparatively few requests for listening training, but rather more for technology support, telephone training, assistive devices, and that the services should be individualized—everyone is different....The lack of personalized services emerged spontaneously as an issue,” (p. 14).2 Following are examples of CI-user generated recommendations regarding short- and long-term/lifelong services: Include at least 4-6 programming sessions in the first year after surgery, and 2-3 sessions per year up to five years after surgery. Include rehabilitation from the beginning as part of the core provision of implant services. In the long-term, include at least one appointment annually, to monitor progress and provide a technology check. Include quick and ready access to technology support when required, including spare parts, such as processors, cables and coils, and regular processor upgrades. Provide access to bilateral cochlear implants where appropriate. Provide information in accessible formats, promoting health literacy and patient involvement in their own care. Be person-centered, with access to appropriate peer group support and counselling services. “EVERYONE IS DIFFERENT” It is important to note that these recommendations were not meant to apply to all CI users. To the contrary: each one is a prompt to focus on person-centeredness. “It is the patient who should define what is desirable and undesirable and reporting what is accessible, convenient, comfortable and timely. Also, it is them who should inform to what extent they have been listened to, informed, involved in decision making and treated with respect and what outcomes should be pursued and what risks should be accepted,” (p.ii1).13 Cullington14 framed person-centeredness as “putting the patient in charge” and reminds us that “patients are the experts in their condition, lifestyle and individual needs.” Professionals of course are also experts in aural rehab overall, so the optimal goal is an equal partnership, co-developing individualized treatment plans based on each CI user’s goals and their professional’s expertise. The recommendations described above can serve as a conversational starting point to discuss each patient’s personal preferences for aftercare, within the real-world limitations on clinical personnel, resources, time, and more. Sharing these sample suggestions provides a framework for a person-centered conversation: each CI user’s reactions, preferences, goals, learning style, time constraints, and doubts will be unique, and so should be their rehabilitation.15 Person-centered care has been shown to positively affect patient satisfaction. In aural rehab, this translates to seeing a hearing loss as secondary to the person who lives with hearing loss.16,17 OVERARCHING LIFELONG CONCERN: SUSTAINABILITY Understandably, one topic weighed especially heavily on survey respondents’ minds: the worry about reliable funding for ongoing appointments, technology updates, repairs, replacement parts, and more. Living with the uncertainty of how these expenses will be managed can be a debilitating stressor.18,19 Audiologists know that health care insurance coverage varies widely across the globe, and solutions need to be developed locally. For inspiration, we could keep in mind the respondents who reported living without their CIs while they worked out how to pay for repairs or replacements. A respondent described how this lived experience feels: “No implant: no sound, no family life, no friends, no job (I am a nurse), no birds, no cat’s purr, no wind in my ears, no sound of waves, no children’s laughter…. Implants = life.” CONCLUSION Survey respondents provided valuable insights regarding their experiences, and while sharing their challenges, they also communicated how much they valued and needed their implants to ensure everyday communication. The cochlear implant is a remarkable intervention proven to be both clinically and cost effective.20 Respondents remind us why it is so important that CI users have personalized and ongoing sustainable support from their professional teams to ensure that these recognized benefits are realized. To access the complete survey report, please visit www.ciicanet.org/resources. About CIICA: the Cochlear Implant International Community of Action is the international network of cochlear implant user groups, families and professionals with a global reach. It is a not-for-profit organization with the aim of increasing access to cochlear implantation and improving lifelong services for those with cochlear implants. There are no membership fees. CI users, their support systems, care providers, and organizations are all welcome. Thoughts on something you read here? Write to us at [email protected].

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