Tinnitus services in the United Kingdom: a survey of patient experiences

Tinnitus, defined as the perception of sound in the absence of the corresponding external sound source is a common symptom: epidemiological studies from several countries have shown point prevalence figures generally between 10 and 15% of the adult population [1]. In the UK, the largest survey of tinnitus prevalence was undertaken as part of the National Study of Hearing in England, surveying 48,313 people [2]. Tinnitus in this study was reported by 10.1% with 2.8% describing their symptom as being at least moderately annoying. For 0.5% of respondents their tinnitus was having a severe effect on the ability to undertake activities of daily living.

Although a cure for tinnitus remains elusive there are many strategies for helping to ameliorate the impact of the condition [3, 4] including explanation and reassurance, counselling, management of associated hearing loss, sound therapy and psychological modalities such as cognitive behavioural therapy (CBT) [5‐7], mindfulness meditation [8] and acceptance and commitment therapy (ACT) [9].

There have been various attempts at producing a set of structured guidelines for the management of tinnitus: The Department of Health in England issued a consensus document that presented commissioning guidelines and best practice advice in 2009 [10]; the American Academy of Otolaryngology published evidence-based clinical guidelines in 2014 [11]. The National Institute for Health and Care Excellence (NICE) have published a Clinical Knowledge Summary regarding management of tinnitus [12] but have not, to date, produced a formal Quality Standard.

Several service evaluations have accounted UK National Health Service (NHS) tinnitus services from the perspective of general practitioners (GPs), audiologists or hearing therapists (in the UK, hearing therapists are health care professionals who specialise in the rehabilitation of patients with hearing loss, tinnitus and other otological symptoms, but generally do not become involved with audiological testing or fitting of hearing instruments) [13‐15]. In those service evaluations, clinicians provided an overview of what they perceive that they offer to patients with tinnitus, what resources they have and use and the training they have undertaken. They also provided opinions on what make for a good tinnitus service and how effective they considered their care to be. Surveys of healthcare providers tell part of the story but do not necessarily define the services as perceived by the end user. A recent publication has evaluated the effectiveness of different tinnitus and hyperacusis therapies from an end user perspective in a single UK hospital [16]. They concluded the most effective components of interventions to be counselling, education, and CBT. The current study was a retrospective analysis of anonymised data collected by the British Tinnitus Association (BTA) [17] and was developed to account the patients’ experience and evaluate nationwide tinnitus healthcare services from the patients’ viewpoint.

This study was a service evaluation involving retrospective analysis of anonymised data originally collected by the BTA from its members to inform a cost of tinnitus care study [18]. Data were analysed with the support and permission of the data controller (DS). This use of the data complies with the governance procedures of the charity. As this study was a retrospective service evaluation and used only highly anonymised data for the sole purpose of service evaluation, individual consent was not sought, and research ethics committee review was not required [19].

A total of 977 responses were received. Twenty of these were identified as duplicates where participants are assumed to have started the questionnaire, paused and then re-started afresh. Twenty responses were identified as coming from outside the UK, despite the instructions stating that the survey was intended for people in the UK. These 40 entries were discounted from the analysis. A further entry was from a respondent living on the Isle of Man. The Isle of Man is a British Crown Dependency and as such is not officially a component part of the UK. However, Manx healthcare shares some services with the North West region of the UK and it was therefore retained in the analysis. In total, 937 responses were subjected to analysis.

Responses were received from all regions of the UK (Table 1), though comparing responses to population density figures from the Office for National Statistics [21] showed a slight overrepresentation from the South East (13.74% of UK population: 20.38% of survey respondents) and South West (8.40 of UK population: 13.34% of survey respondents).

Eight hundred sixty-six respondents identified their gender: 440 women, 425 men and 1 transgender. Eight hundred seventy-three people identified their age (Fig. 1). The modal group by age distribution was the group aged between 50 and 69. This concurs with epidemiological studies of tinnitus which generally show that tinnitus is most prevalent in this age group [2].

This is the first account of the patient experience of tinnitus services in the UK generated from a large patient survey.

Nearly half of respondents (44.5%) to the survey presented to their GP within three months of the onset of their tinnitus and almost three quarters had done so by the one year mark. Most respondents obtained onward referral to ENT/AVM or audiology which is similar to the findings of a survey of audiology departments [15] though only 55.4% were referred after their initial consultation. Among those patients who were not referred immediately, initial management typically consisted of information provision, prescription of medication or watchful waiting. Surprisingly, almost one fifth of the respondents (19.5%) stated that their GP took no action whatsoever at their first appointment. It is interesting to contrast patient perceptions of management with those of GPs: A survey of UK GPs [13] found that 35% of GPs reported that they gave out information leaflets regarding tinnitus. When patients were asked a similar question in the current survey only 10.7% reported receiving information. When GPs did provide tinnitus information in the current study, they did so either directly or by referring patients to internet resources. Furthermore, a survey of the online information sites favoured by GPs has shown considerable variation in the quality of information that is offered [23].

There were some notable differences in the prescribing practices of primary care and secondary care physicians. The figures regarding drug prescription in primary care (20.1%) tallies closely with the estimate of 17% reported in the GP survey [13]. Common prescriptions were psychoactive drugs, antibiotics, both systemic and topical, betahistine or nasal drugs such as decongestants and topical steroid sprays. In secondary care, only 10.1% received drugs and the common prescriptions were betahistine, nasal drugs and systemic steroids. The difference in overall number of prescriptions was significant (Fisher exact test p < 0.0001) and there was also significant difference in some of the types of prescribed drug with antibiotics, nasal drugs and antidepressant drugs more likely to be prescribed in primary care (Fisher exact test, p = 0.0159, p = 0.0478 and p < 0.0001 respectively). By contrast, systemic steroids were more likely to be prescribed in secondary care (Fisher exact test p = 0.0322). Antibiotics are clearly an appropriate management if the tinnitus has been triggered by a bacterial infection. It is, however, notable that only one respondent reported receiving antibiotics from a secondary care physician. Tinnitus is not infrequently accompanied by a blocked sensation in the ear. It seems likely that physicians without access to advanced diagnostic equipment interpret this as evidence of infection and prescribe antibiotics accordingly. Similarly, this blocked sensation may be misinterpreted as evidence of Eustachian tube dysfunction. Nasal drugs to improve Eustachian tube function are then the logical treatment. There were almost 8 times more nasal drugs prescribed in primary care compared to secondary care, again suggesting that once diagnostic equipment such as tympanometers or operating microscopes were available to clinicians a more accurate diagnosis could be made. There is no robust evidence to support the use of betahistine in the management of spontaneous idiopathic tinnitus [24], but this drug may be appropriate if tinnitus is a component of Ménière’s disease. In their clinical practice guidelines, Tunkel et al. [11] recommended against the use of antidepressants, anxiolytics, anticonvulsants and intra-tympanic medication for the routine treatment of persistent, bothersome tinnitus. Psychoactive drugs do, however, have a role when there is comorbid psychological illness, generally anxiety or depression [25]. The large difference in the prescription of psychoactive drugs between primary and secondary care probably reflects that ENT physicians do not feel that it is part of their remit to manage mental health conditions. Some respondents reported that they had been prescribed amitriptyline, specifically to access what is usually regarded as a side effect, namely its sedative properties.

Clinical guidelines and best practice documents recommend that all patients with tinnitus should undergo a basic audiometric assessment and ultimately the majority of respondents who answered this section of the questionnaire did undergo hearing tests. The process by which this happened appeared haphazard with multiple different pathways and no standardisation of when the testing should occur. A small number of respondents (1.1%) reported that they had never undergone a hearing test, which does seem to be a shortcoming in their care.

After audiological testing, the only diagnostic test that was performed regularly was MRI scanning (59% of those assessed by ENT or AVM underwent an MRI scan). The most common reasons for requesting medical imaging are unilateral or significantly asymmetric tinnitus or asymmetric audiometric tests [26]. As epidemiological studies have shown that approximately half of people with tinnitus have unilateral tinnitus [27], this rate of investigation seems appropriate. Use of such diagnostic tests carries financial implications which are discussed in a separate study [18].

It is perhaps surprising that only about a third of patients who underwent diagnostic assessment by ENT/AVM were subsequently referred onwards for therapeutic management of their symptom. The survey made no attempt at determining the severity of individual respondents’ tinnitus. It is therefore possible that some people simply wanted the reassurance of knowing there was no serious underlying pathological reason for their tinnitus and were then content to self-manage. Although figures did not reach statistical significance, a higher proportion of patients who were discharged after investigation returned to their GPs compared to those who were referred for audiological tinnitus management.

It is illuminating that 38.5% of patients re-presented to their GP regarding their tinnitus, and for 39.9% of these, return was within the first two months after discharge from the hospital. Of those returning to primary care, 36.5% were referred back to hospital, 24% were prescribed medication and 39% were offered no further help. Thus, one in eight of the overall survey population went through secondary care, returned to primary care and were then re-referred to secondary care. Although this ‘revolving door’ pattern is well recognised in various healthcare areas such as mental health services [28] and care of the elderly [29], this is the first time the phenomenon has been reported by tinnitus patients. The survey did not explicitly ask why people went through the process two or more times, though several reasons are possible: it may be that the treatments offered were ineffective, or their tinnitus changed or that they were dissatisfied with the service they had received. A survey of GPs and ENT specialists in Western Europe, UK and USA [30] found a low success rate of tinnitus therapy. Whatever the cause, revolving door healthcare is time consuming for both patient and health care professional and carries significant financial cost implications [18].

The evidence base for the efficacy of the available tinnitus management strategies is limited but there is there is a reasonable level of scientific evidence of the effectiveness of psychological therapies particularly cognitive behaviour therapy in the management of tinnitus [3, 7]. It was therefore surprising to see that the people who commented on psychological treatment of tinnitus were more likely to describe it is as unhelpful by a factor of 2.0. Admittedly this was a very small sample (n = 6) and it would be wrong to read too much into the observation. However, only 24 respondents (2.6%) reported that they had seen a psychologist. Psychological treatments were also delivered within some audiology departments by audiologists and hearing therapists. It is not standardised however and there is currently no research evidence for the effectiveness of an audiologist or hearing therapist psychological intervention [31].

Free text responses to the final tinnitus-related question in the survey give considerable insight into patients’ perceptions of tinnitus services. Physicians within the tinnitus pathway were considerably more likely to be seen as unhelpful rather than helpful. One sixth of the people who replied to this question (102 of 604) were critical of their GPs management. By contrast audiologists and hearing therapists were more likely to be described as helpful, by a factor of 2.4. There are models of tinnitus care in the United Kingdom in which audiologists see tinnitus patients via direct referral pathways and undertake the majority of the care process: this is an area that merits further investigation.

Sound therapies were generally seen as helpful. This is particularly interesting as both sound therapies and hearing aids are widely used in tinnitus clinics [32], the latter for even quite modest hearing losses, but there is scant scientific evidence regarding efficacy [33‐36].

The most common factor that people would like to see improved was the speed of delivery of tinnitus services: 7.0% of people who answered this question felt that they had experienced unacceptable delay. Although this was seen as a problem within GP and ENT services, other issues may be involved. Clinical Commissioning Groups in some cases stipulate that patients with tinnitus should not be immediately referred to secondary care. For example, the guidelines produced by North East Essex Clinical Commissioning Group [37] recommend referral only if there is (1) consistent bilateral tinnitus (persistent for over 20 weeks) and hearing loss, or (2) unilateral tinnitus (persistent over 2 months). Exploring other forms of tinnitus intervention may help to deliver a more timely service. For example, internet delivered CBT has been successfully trialled in other countries [38]. A pilot study has been undertaken in the UK and more rigorous research is underway [39‐42]. The effectiveness and cost effectiveness of these alternative pathways need to be investigated.

In comparison with most other countries, the UK has well developed tinnitus services with a network of audiology departments offering a range of tinnitus management paradigms and in England’s case a national best practice document. Asking the end user, however, tells a different story: one fifth of patients reported that at initial consultation their GP did nothing; two thirds of people who are referred for diagnostic services in secondary care are then discharged without any therapeutic intervention; one in eight people with tinnitus are referred from primary to secondary care, discharged and then re-referred to secondary care, creating expensive and unsatisfactory revolving door healthcare; only one in forty are able to access psychological services for tinnitus, despite an evidence base that suggests psychological treatments are the most efficacious management strategies. One third of patients report nihilistic attitudes from healthcare professionals. Clearly change is needed: tinnitus management at primary care, counselling/CBT in secondary care, and alternative referral pathways are priorities for both research and service development.