Hearing loss is an invisible yet pervasive condition affecting an estimated 1.5 billion people globally. Its impact is far-reaching, from impeding communication to affecting the emotional, cognitive, and physical well-being of those affected. For individuals over the age of 70, it is the leading cause of years lived with disability. Yet, its true scope remains underrepresented and, more often than not, underfunded. This neglect comes with a staggering cost: WHO estimates that unmanaged hearing loss incurs an annual global cost of US$980 billion.

Cochlear implants have emerged as a powerful solution. Clinical evidence has consistently validated both the effectiveness and cost-effectiveness of cochlear implantation for providing useful hearing. The process involves an assessment, surgically implanting a small electrode into the cochlea, rehabilitation, and the ongoing fitting and maintenance of an external speech processor.

However, a gap exists in our understanding of the access to and utilization of these life-changing devices. That's where CIICA (Cochlear Implant International Community of Action) steps in. Committed to highlighting the issues and needs surrounding cochlear implants, CIICA, in partnership with York University, Toronto, Canada, has conducted an exhaustive global consultation.

THE CIICA SURVEY ON COCHLEAR IMPLANT SERVICES WORLDWIDE

The study featured a global online survey, translated into six languages and encompassing 1,076 respondents from 40 countries. Participants' ages ranged from 18 to 91 years, and their implantation age varied from just a few months to 88 years. Notably, CI users were involved in the survey's development, ensuring the questions were pointed and relevant.

Context:

• 1.5 billion people globally suffer from some form of disabling hearing loss (WHO, 2021).
• Unaddressed hearing loss has a significant, yet often overlooked, impact on multiple aspects of well-being, including communication and emotional health (WHO, 2021).
• Hearing loss is the leading cause of years lived with disability for those over 70 (Lancet, 2021).
• Unmanaged hearing loss has an annual global cost of US$980 billion (WHO, 2021).
• Cochlear implantation is both effective and cost-efficient in facilitating useful hearing and involves assessment, surgery, device fitting, and ongoing rehabilitation.
• There is a wide variation in access to and use of cochlear implant services, with limited research available on needed services.

Survey Findings

Satisfaction Levels:

• 72% were very satisfied with their CI
• 24% were satisfied
• 4% were not satisfied

Rehabilitation Services:

• 32% reported insufficient rehabilitation
• 27% had no rehabilitation services at all

Spare parts and processors:

• 11% had no spares
• 26% had no spare processors

Personal Payment:

• 36% paid out-of-pocket for spare parts
• 29% paid for repairs
• 54% paid for accessories
• 49% paid for batteries

CI Users Were More Satisfied With:

• Regular appointments for technology management and rehabilitation
• Quick and straightforward access to technology support
• Opportunities for technology upgrades, bilateral Cochlear Implants (CI), and access to spare parts
• A collaborative, person-centered care approach that includes peer groups, CI-specific groups, and counselling services
• Options for informal and self-initiated therapy

Greatest Concerns:

• The daily worry of technology malfunction
• The need for lifelong service and support
• Funding challenges

Recommendations:

• Integrate access to CI services into ear and hearing care plans.
• Increase awareness about the benefits of CI and referral criteria among the deaf and deafened community, professionals, the general public, and public health decision-makers.

Lifelong CI services should:

• Offer 4-6 programming sessions in the first year following surgery, then 2-3 sessions a year for up to five years.
• Incorporate rehabilitation from the outset as a core component of implant services.
• Schedule at least one annual appointment for progress monitoring and technology checks.
• Provide swift access to technology support, including essential spare parts like processors, cables, and coils, along with regular processor upgrades.
• Offer bilateral cochlear implants where suitable.
• Adopt a person-centered approach, including peer group support and counselling services.
• Disseminate information in accessible formats to foster health literacy and encourage patient participation in their own care.
• Secure funding to maintain the sustainability of services and facilitate lifelong access to support.

What does this mean for CI users in Aotearoa, New Zealand?

The findings from CIICA's global consultation provide invaluable insights that highlight both the triumphs and gaps in cochlear implant services. As a founding member of CIICA, the Pindrop Foundation is committed to advocating for policy changes and supporting initiatives that address these identified needs, aiming for more equitable access and an improved user experience.