May 2020 BMC Health Services Research
The incidence of significant, acquired hearing loss in adults is rising year on year. In the United Kingdom (UK), it is estimated that 5.3 million adults over the age of 65 have a hearing loss and that, by 2030, hearing loss will be in the top ten disease burdens above diabetes and cataracts. In Australia, it is projected that by 2020 there will be more than 573,000 adults with severe sensorineural hearing loss (SNHL). The rising incidence of hearing loss in an ageing population is a significant public health concern as hearing loss is a known risk factor for dementia, disability, depression and mortality.
Additionally, hearing loss has significant negative implications for individuals in relation to communication, work and education, and social participation and affects quality of life. As the incidence of severe SNHL rises, cost-effective interventions to mitigate the negative impact are needed. Despite the benefits of cochlear implantation and the known costs of untreated hearing loss, utilisation of CIs each year remains low relative to prevalence. This is a trend reported in developed countries worldwide irrespective of these nations’ healthcare systems. Raine et al. estimated the utilisation of CIs in the UK adult population, for example, is below 5%, whilst Sorkin reported utilisation rates in the United States (US) of less than 5%. Similar utilisation rates are reported elsewhere. The reasons for low utilisation rates are still not yet well understood and there appears to be limited research investigating factors contributing to CI uptake. To the authors’ knowledge, few studies have explored the patient journey of adults with hearing loss in relation to cochlear implantation.
This was a multi-phase, multi-method study conducted in Australia and the United Kingdom, between June 2017 and April 2018. The UK’s publicly-funded National Health Service (NHS) offers universal healthcare that is free to all legal residents from point of use whereas healthcare in Australia is delivered as a mixed system of public providers and services funded by private insurance. Conducting the study across different health systems enabled the study team to capture the views of different populations towards cochlear implantation and in different healthcare contexts, providing insights into specific cultural and contextual factors that may be at play.
Focus groups and individual interviews were facilitated by a researcher, one in Australia and another in the UK, both with extensive experience conducting research, and no prior relationships with participants.
Theme 1: The burden of hearing loss and the impact of Cochlear implants
HA and CI users emphasised the impact of hearing loss on their ability to communicate effectively: “It’s difficult for people to communicate, to engage ... it halts or stops your spontaneous communication” Patients found this particularly challenging in group situations, or on the phone, as well as when trying to hear announcements on public transport, or speak to doctors and other professionals: “It truly is soul destroying having to ask people to repeat themselves constantly”. Patients described the listening effort required in these circumstances as particularly exhausting:
I’m used to analysing things and looking for meaning beneath the surface ... Now I’m just struggling for the superficial of what are they’re saying and to me that’s been the biggest loss ...
The effect of increased listening effort resulted in changes to HA and CI users’ sense of self-identity, and the sense that others perceived them as “stupid because [they] can’t hear properly”. They felt less sure of themselves, their self-confidence progressively declined, and they saw themselves as ineffectual communicators, who needed to find extensive adaptive behaviours:
It’s almost like hearing impairment actually makes you inferior ... People seem to be more comfortable helping someone with vision problems. They’re less patient with people who have communication difficulties. Some HA and CI users reported using strategies to cope, including lip reading, choosing a quiet environment to talk in, and using emails to communicate. However, this still led to frustration and stress, affecting their social life, and limiting their opportunities at work.
Most CI recipients discussed the effect of CIs on their wellbeing and were generally positive, reporting a marked improvement in their emotional wellbeing, hearing, and communication as well as reduced listening effort and listening-related fatigue: “I would suffer from dreadful tiredness from trying to communicate all day. It used to take so much out of me to listen. Now I forget how much trouble I had and how tired and depressed it used to make me feel”.
HA and CI users suggested improvements need to be made to professional education, to better support adults to understand their options, enabling patients to receive better information early on, and providing greater access to CI services. Similarly, they talked about the need for health promotion campaigns to support greater aware- ness, understanding and empathy in the general public about what it means to have a hearing loss, the impacts and limitations of CIs and HAs and the need for improved support infrastructure, and services.
People in the everyday world, which includes health professionals, [need] to develop more understanding of hearing impairment, and not consider a [HA] or a [CI] as something that restores hearing to normal function.
The provision of psychosocial support from hearing services, increased access to CIs for individuals, and continued financial and technological support from CI manufacturers, insurance companies and hearing organisations were seen as ways to ease the burden of hearing loss by both CI and HA users.
Unilateral CI recipients were protective of their remaining hearing in the other ear, fearing further damage, and guarded against this by avoiding noisy situations. They were satisfied and grateful for the improvements in hearing, however a number of challenges remained, including trying to hear conversations in large groups, and using the telephone. Other issues included the need for regular battery changes, the dissatisfaction with the quality of the CI sound, and the need for safety devices, to provide alerts when they took off the external part of their device. Live entertainment also proved difficult for both HA users and CI recipients who, limited by their hearing loss, had to rely on captioning or subtitles. Some CI and HA users talked about the burden of costly devices and upgrades, problems of travelling to hearing health services, and ongoing associated maintenance costs leading to a reliance on financial support from private health insurers, and government schemes.
Theme 2: Professional support and practice, and HCPs roles and responsibilities
HA and CI users discussed the practical assistance they received from HCPs. Both groups found accessing health information themselves challenging, due to the severity of their hearing loss:
To complement the patient perspective, HCPs discussed their practice, roles and responsibilities. CIs are first introduced by HA audiologists when patients report inadequate HA benefit, and when audiometric results suggest patients may benefit from a CI. Feeling supported and provided with consistent information was seen to be important to help patients to come to terms with changes in their hearing loss and needs. However, Australian and UK audiologists described patients as often negative about CIs to begin with and as a result, discussions and decisions about CIs often required multiple sessions.
Audiologists’ perceptions of their own roles varied. Some thought they were there to provide a basic service only, while others felt patients required more active support. This included: making appointments for CI clinic assessments, providing resource materials, directing patients to hearing associations, and ensuring patients were fully informed. GPs on the other hand, saw themselves as playing a coordinating and referral role only. Key decision points in the patient journey, as perceived by HCPs, included patients’ acknowledgment of their hearing loss, accessing hearing healthcare services, deciding to have an HA fitted, agreeing to a CI assessment, and agreeing to CI surgery.
Most patients reported being satisfied with their audiologists’ advice and support, but felt that knowledge of CIs was variable amongst HA audiologists. A lack of individual clinician-patient continuity was seen to be problematic, especially if patients had to provide their hearing history repeatedly to new clinicians along the way. Audiologists felt that poor patient-clinician continuity made the building of trust challenging, and often resulted in a lack of awareness of a patient’s hearing history. HA audiologists did not always feel confident discussing CIs with patients and fragmented care could make it more difficult for professionals to confidently raise the issue of CIs with patients, and to understand the impact that conversations with preceding clinicians had on a patient’s perception of CIs.
Communication between HCPs in Australia was reported to be inconsistent and unidirectional at times, with audiological assessment reports sent to GPs, specialists, and CI clinics, but feedback rarely received by HA audiologists, whereas communication between HCPs in the UK was reported as much more consistent. In Australia, shared care was reportedly lacking, between GPs, audiologists, and specialists: We find ourselves sometimes chasing up communication from medical professionals, particularly specialists. Sometimes ensuring the lines of communication are open falls to the client.
HCPs in Australia felt the referral pathways were convoluted and lacking in clarity. Whereas in the UK, audiologists reported typically sending CI candidates to either a senior audiologist or a CI clinic, as well as to hearing associations for information. Colocation of some hearing clinics with CI clinics in the UK, made bidirectional communication and shared patient information more feasible. Multidisciplinary team meetings were suggested by several UK audiologists as an effective strategy to improve shared-care, where patient cases were discussed across health specialists.
HA and CI users felt most GPs prioritised other health conditions over hearing health. GPs self-identified as lacking knowledge about CIs and hearing loss devices in general and felt unable to directly advise patients. They were often seen by patients as lacking in knowledge regarding
hearing pathways, adding unnecessary time, especially during early-stage investigations, to the patient journey through the system.
Many HA and CI users found support groups helpful and valued attending functions where they could access CI information, and increase opportunities for social support, enabling HA participants to meet CI recipients, and gain first-hand information about CIs.
The results from this study have the potential to inform clinical practice with respect to public health. Our interpretation of participant accounts suggests that strategies to increase public awareness of hearing loss could empower patients to raise cochlear implantation with their HCPs, leading to timely referral to CI specialist programmes. Moreover, increased public awareness could empower patients’ help-seeking behaviours, particularly with regards to information access. Adult hearing loss Associations are powerful providers of support and buddying schemes. These may be particularly helpful when patients face difficult decisions about CI referral and surgery. While schemes are currently available in many countries, including Australia and the UK, the study findings suggest patients value access to expert patients and CI mentors early in their CI journey and at key points (e.g. during referral for assessment of CI candidacy). The findings also suggest that, post-implantation, CI recipients are motivated to help others in their journey to cochlear implantation and, in return, gain a sense of empowerment. These findings add to previous research exploring the positive role of support groups for CI users and are compatible with previous studies investigating the effect of group support on wellbeing and social isolation.