NICE Tinnitus Assessment and Management Guideline — Feedback Committee

Yes it is. Here is an excerpt:

Hyperacusis assessment and treatment – Should be considered as part of the guidelines. Hyperacusis often results from tinnitus or is a co-morbidity and people with tinnitus may be treated for hyperacusis differently than those without tinnitus as there may be additional risks associated with noise exposure for patients with tinnitus in particular.

 

I agree with most of the recommendations.

The use of either MRI, MRA or CT has concerns. MRIs and MRAs are loud and CTs with radiation can cause physical issues that can lead to pulsatile tinnitus, more so with already having tinnitus. With multiple CTs, the thyroid, eye pressure, vision and headaches, narrowing of veins and arteries and then increased plaque - cholesterol, soft palate, over active salvia glands are just of the problems caused by radiation.

As to how we can overcome harm from many treatments that's includes radiological testing, many medications, ear cleaning, dental procedures - drilling and especially having to have the mouth open and wide, and certain hearing exams is beyond me.

Tinnitus is caused from something gone wrong. Many complaints have been made by those receiving tinnitus from a medical procedure or from prescribed medications and many have been made worse by them with having tinnitus.

The bottom line is some treatments are needed and more so with tinnitus, but nothing at all is safe for all.

I think that this project has made an honest effort - well done.

 

Just had a quick skim over the documents. Cannot see anything with regards to masking devices only amplification. I hope I have made a mistake.

 

You guys did a great job! I especially appreciate you mentioning lower noise safety levels recommendations for people with tinnitus and the potential difficulty of restoring normal day to day living. Also, thank you for stressing the importance of funding medical research.

 

Lol at my spelling mistake "hyperactive". The rest of my post made it clear I was talking about "hyperacusis". These things happen when you're lying awake posting on Tinnitus Talk at 4.42am!

 

Thanks Sean. Do you know which document that was in? I did see mention of hyperacusis along with other symptoms somewhere, but I don't think it is in the main "Draft-Guideline" document. As this is may be the only document that a busy GP will have time to read, I still feel I would like to see it promoted to a more visible level - perhaps even making the title of the document or at least referenced on the front page ("This guideline covers the assessment, investigation and management of tinnitus..." could be extended to say "...tinnitus, hyperacusis and other related conditions.").

Whilst most doctors I've seen have got something to say about tinnitus, when I mention "hyperacusis" they seem to have less experience or help to offer.

 

I have set this as a priority.

 

Did this a while back.

Please contribute folks.

NICE guidelines are super important in the UK and the UK is a very dominant and influential country for research 2nd only to the states so changes in practice here may have influence elsewhere.

 

Given all the documents produced to ultimately create these guidelines, it's a titanic job! Frankly a big thank you to the editors! (the committee and all the contributors).

So I read the main document "Guideline - Tinnitus: assessment and management - Draft for consultation, September 2019". Sorry I did not read carefully all the other documents, I just went through them briefly. I do not have much to say except the following suggestion (maybe already suggested):

Ask all practitioners to keep themselves regularly informed about medical research, including current or upcoming clinical trials. They could thus offer tinnitus sufferers (mostly acute tinnitus sufferers) to participate in these clinical trials.

 

Also is there anywhere in the guidelines like:

Things not to say to a tinnitus patient

Instead of saying:

1. There's no cure
2. Just get used to it/ignore it
3. If you've had it for x months, you'll have it for life

Say instead:

1. A number of research projects into potential cures are still ongoing
2. Habitation is possible - here are techniques that some have found helpful...
3. Your chances of improvement can be increased if you take the following precautions in the early months...

 

Hi, I don’t have a lot to add (I’m not in the UK). But, I agree with your call for more research and funding of possible treatments for tinnitus. I also like the suggestion above of what NOT to say. My GP (general practitioner) told me that Id always have tinnitus and it would keep getting worse... and that was all! I was so depressed afterwards, and really lived in terrible fear and depression for a few years.

I like the scaled list of therapies. CBT, especially mindfulness based CBT, is probably a very useful (and cost-effective) psychological modality to use.

 

Under "Sound therapy and amplification devices" much is mentioned of amplification devices but there is no mention of providing some sort of low level background sound with a rationale that there is no evidence for sound therapy as a sole treatment. While that may be a case, I think offering the suggestion of some sort of sound therapy should be included as I feel it can make quite a difference day to day. The CBT can be used in conjunction to help wean off of sound therapy.

 

Can one of the admins please confirm. Are the additional comments in this thread going to be added by someone to the collated feedback form from Tinnitus Talk that was attached? Or do you want us to download and add them to a blank feedback form which will then merged into the collated form? Either way, do you need all of us to quote document and section number, as Autumnly did in her excellent post?

 

I have also read and agree with what Greg has said regarding MRIs and MRAs. In my experience and others' experience, CTs are a bit quieter and "safer" but radiation is still a big concern as well as reactions to contrast dye. No test is 100% safe for everyone but I would say that recommending MRIs and MRAs right off the bat without fully understanding just how loud they are and how dangerous that is for people with tinnitus may not be a very good idea. That bit needs to be thought over a little more closely.

 

Good idea Sean. I applied for a special space in the office car park to save me ten minutes walk past heavy traffic and two noisy building sites but they said I don't qualify for a disabled space. They did book a quiet room for me in the middle of the afternoon at least.

 

My final notes, based on my experience of NHS treatment and on what I have learned through other sources:

Hearing tests

• Extended tests up to 16khz should be offered to tinnitus patients, as well as tests that measure the frequency and loudness of tinnitus tones, which can help indicate a treatment plan. (I was not offered anything more than a basic hearing test up to 8khz).
• When the patient reports symptoms of hyperacusis, hearing test results may appear in the normal range but there may be hidden hearing loss. If the patient's hyperacusis symptoms reduce then they should be offered a further test to assess any change, and their treatment plan modified as required. (My latest results using hearingtest.online are significantly worse now that my hyperacusis has reduced so I will be contacting my audiologist to request this.)

Drug treatments

• Betahistine is covered at length, but no other drugs are mentioned specifically. (I obtained little benefit from this drug)
• Amitriptyline and noritriptylene are often prescribed to help hyperacusis as well as sleep and general mood. Could studies of these drugs be included?
• Steroids are suggested for administering within 3 days of SSIHL. In other countries prednisone is routinely administered for acoustic trauma as well on a taper prescription, but there is limited awareness amongst UK practitioners as to its use and benefits.
• Steroidal nasal spray such as Beconase can be prescribed especially in the case of an ETD.
• Side effects of the stronger drugs should be proactively managed by taking into account the patient's history. (Although amitriptylene has helped my hyperacusis, it has caused a recurrence of my non-asthmatic breathing difficulties which has not been an issue for a number of years before prescribing it).
• A discussion of supplements such as magnesium, NAC, gingko biloba and turmeric could be helpful to patients.

Other notes

• There may be multiple factors behind a patient's tinnitus symptoms. For example, an acoustic trauma event may cause NIT which in turn triggers for the first time a somatic type of tinnitus associated with an underlying bruxism or TMJ issue, which has never caused any prior tinnitus symptoms. The presence of one type of tinnitus or set of symptoms does not negate the possible existence of the other. When a patient has been treated for one type of tinnitus, that should not be the end of their treatment, but information should be shared between front-line GPs and second-line consultants such as ENT specialists and radiographers and TMJ dentists where other manifestations of tinnitus are indicated.
• Questionnaires are routinely issued at tinnitus clinics for patients to describe their symptoms, but their responses are not always followed up. There should be the opportunity for the patient's responses to be discussed in counselling appointments, and for the results to be used by medical staff to guide the patient's ongoing treatment.
• Hearing aids are usually not offered where there is no hearing loss, but they could still be of benefit when paired with white noise generators or with an app on the patient's smartphone to treat hyperacusis - see note on "hidden hearing loss" under "Hearing tests" above.

 

Well first off it really depends on whether your tinnitus is somatosensory or not. Then, whether it's reactive or not. It's not just a lack of rest - which increases cortisol levels, which raises tinnitus - but a whole host of factors. This is the damnable thing about tinnitus, you can't pin it down to one or even two things.

Debilitating tinnitus isn't so much about what's going on with you, though reactive tinnitus is a factor, as it is your reaction to said environment. My somatic tinnitus is completely reactive in the louder the environment the worse it gets. However, if I let it wash over me and forcibly relax in spite of it it does come down. It's like there's a touch of hyperacusis in there yet the moment I say 'Relax dude, it's ok. Everything will be groovy.' it starts coming down.

Rest, alcohol, sugar, etc. all affect the brain. I know on sugar overdoses my tinnitus lights up like a Xmas tree. There's no one size fit's all cure. You need to experiment what works best with you. Believe me, some things definitely work better than others.

Worst comes to worst, get gassed up for the night. It'll get you through it until reset.

 

Sorry Hazel I was away on a long cruise vacation with poor WIFI service. Didn't get back home until November 2.

 

Hello all,

Once again, thanks to everyone who commented on the NICE guideline!

After collating them, the Response Committee met via Skype and reviewed your comments. Their response is in blue on the attached.

The final version of our feedback, submitted to NICE, is also attached.

I am very thankful that Tinnitus Hub exists and that its leadership has made it possible for people with tinnitus to have their voice heard. I feel like a giant step has been taken and hope this is just one of more to come.

TC

 

I got nothing other than the regulatory process is too slow. Sorry I cannot offer any other positive input.

 

NICE needs to be informed of Allan Curran's passing if it was tinnitus related. While they don't commission research they have influence. Funding for effective treatments and cures are needed. Forget the stiff upper lip stuff and commit resources where they are very obviously needed. This man had a family, he will never be there to see his children grow up and have children of their own. And, he will not be there to share in their joys and disappointments. TC

 

I’m not sure NICE are the right body to inform.

BTA definitely - it’s soon Tinnitus Week and I’m hoping that any media they do will not be showcasing people managing their tinnitus well. Who champions the rest? I need to understand more about the funding process - who is ultimately responsible for the lack of funding in the UK? And US - with those two areas covered we can get somewhere in terms of lobbying or campaigning.

 

I saw this posted on Hyperacusis Research earlier! The recommendations look encouraging, notably first of all for the fact that they are acknowledging that tinnitus (and related conditions like hyperacusis) are serious, debilitating conditions in their own right and it's not just a matter of your "response" to it.

Also positive that they noted that LDL testing and MRIs can be risky and often unnecessary and more care should be taken to assess symptoms beforehand.

Thank you for posting about this @Hazel!

 

Should be soon, I'm looking at the comments NICE made on each of Tinnitus Hub's comments and am also comparing the draft guideline to final guideline to see what changes were made in response to Tinnitus Hub's comments.

 

Attached are Tinnitus Hub's comments and the NICE response on the NICE Draft Guideline, Tinnitus: assessment and management. The Final Guideline has now been issued and can be found on the NICE website at the link in @Hazel's post above.

In summary, Tinnitus Hub made 10 comments on the draft guideline. As a result of the comments NICE modified the Guideline as follows:

• included a recommendation that people with longstanding tinnitus who are seeking medical assistance for the first time be questioned about the reasons why they have not sought help in the past.
• added information about the impact of the loud noise of an MRI on tinnitus and need to dispense ear plugs into the rationale and impact for the imaging reviews and committee discussions in Evidence Reviews J and K.
• added information about the impact of tinnitus on sleep.
• added reference to the patient experience guideline which sets out broad principles in information provision to insure healthcare professionals are signposted to the most up to date information on tinnitus.

Comments from Tinnitus Hub that resulted in a response from NICE but no modification to the guideline can be summarized as follows:

• Tinnitus Hub commented on its experience and observation that management strategies, including psychological therapies, do not benefit the entire tinnitus population, particularly those with intrusive tinnitus. Therefore there is an urgent, unmet need for pharmacological or medical interventions for the treatment of tinnitus. Tinnitus Hub pointed out that tinnitus research is severely underfunded and that effective treatments leading to cures are needed.
• NICE responded that the committee decided to make research recommendations for management strategies as they can help people cope with their tinnitus irrespective of tinnitus severity. Lay members on the committee also expressed that the research recommendations will be beneficial for people with tinnitus. NICE goes onto say that they have made a recommendation for further research into neuromodulation, a key area that requires further research and that full details can be seen in Evidence Review O.

• Tinnitus Hub commented that healthcare professionals should provide an explanation of the various subtypes of tinnitus (subjective, objective, pulsatile, somatic, iatrogenic) but no reference or attempt to classify tinnitus is found in the guideline.
• NICE responded that apart from subtypes that can indicate a structural cause identifiable through imaging (ex, pulsatile tinnitus) sub-types based on perception were not considered a priority area to be included in the guideline.

• Tinnitus Hub commented that there is concern among its members that some anxiolytics and antidepressants or sleep medications may be ototoxic or have tinnitus as a side effect. More research and a guideline for prescribers is needed.
• NICE responded that this is an important issue, but is outside the scope of the guideline.

• Tinnitus Hub questioned the definition of sudden hearing loss and whether or not moderate or minor sudden hearing loss could cause tinnitus. Tinnitus Hub went on to assume that any type of hearing loss could benefit from medical intervention such as oral or intra-tympanic steroids and queried whether these interventions could be extended to include those moderate or mild hearing loss as well.
• NICE responded that the onset of sudden hearing loss is determined by the person telling the health professional the time in which it developed. This enables the healthcare professional to determine if its sudden or progressive. Sudden hearing loss is defined according to the time in which it developed, either over 3 days or less within the past 30 days or over 3 days or less more than 30 days ago. The recommendation applied to any kind of sudden hearing loss and the committee agrees that people should be seen for medical intervention as highlighted in the recommendations.

• Tinnitus Hub commented that the assessment of tinnitus include a detailed medical history and medical examination that includes offering blood test to ascertain is anaemia or diabetes is present.
• NICE responded that physical exam and clinical history is important, however, how these are done is outside the scope of the guideline so no recommendations can be made.

• Tinnitus Hub commented that a determination of whether TMD symptoms exist should be made.
• NICE responded that TMD was not identified as a priority for inclusion in the scope.

• Tinnitus Hub commented that the Secondary Care Assessment section does not refer to any test performed nor specify who the secondary care practitioner would be.
• NICE responded that people with tinnitus need to be referred based on their clinical presentation and local pathways. Recommending specific tests or details about roles of healthcare professionals is outside the scope of the guideline.

• Tinnitus Hub commented that anxiety and depression resulting from tinnitus requires tinnitus focused psychological interventions as per the suggestion made by NICE earlier in the guideline. Therefore specific guidelines for such focused interventions should be included rather than signposting to generic guidelines on anxiety and depression.
• NICE responded that since the section of the document in question is about psychological assessment, the committee did not think it appropriate to refer to recommendations on psychological therapies.

• Tinnitus Hub commented that although the guideline recommends people with tinnitus be asked about insomnia, no recommendations are made for addressing sleep problems.
• NICE responded that basic advice on sleep management should be provided as part of the information and support offered to people with tinnitus. Specific details on this are outside the scope of the guideline.

• Tinnitus Hub commented on the section of the guideline that speaks to Assessing How Tinnitus Affects Quality of Life. The comment stated that guidelines for teachers and employers would be welcomed.
• NICE responded that the guideline is intended to cover all settings where NHS-commissioned care is provided.

• Tinnitus Hub commented that an extended high frequency hearing test be administered to determine if the cause of tinnitus is due to hearing loss at higher frequencies than normally tested.
• NICE responded that no evidence was identified that evaluated the use of high frequency audiometry, therefore a recommendation could not be made.

• Tinnitus Hub commented that there is some evidence that hearing aids can be helpful for tinnitus patients with very minor hearing loss. Tinnitus Hub referenced the paper cited on BTA's website as support. Tinnitus Hub also requested further clarification about sound therapy.
• NICE responded that the paper cited (from BTA's website) was excluded from their consideration due to incorrect population and incorrect comparators. NICE went onto say there is insufficient evidence to recommend sound therapy and has recommended further research evaluating sound therapy with tinnitus support. The sound therapy component would include sound enrichment or masking.

• Tinnitus Hub commented that we agree with NICE that CBT and psychological therapies should be tinnitus focused and taylored to tinnitus patients and that it be more accessible.
• NICE responded that the committee noted that CBT could be delivered within different scenarios depending on whether tinnitus was the main issue or if co-existing anxiety and mood disorder were the main issues.

• Tinnitus Hub commented that hyperacusis assessment and treatment should be considered as part of the guideline.
• NICE responded that the guideline only applies to tinnitus and managing sound sensitivities such as hyperacusis were excluded. The committee have made a recommendation to make a management plan for those people with identified needs which would take into account other factors such as sound sensitivity.

OTHER

NICE did not respond to Tinnitus Hub comments made about the need for recommendations on safe noise levels and durations specifically for the tinnitus population.

NICE did not respond to Tinnitus Hub comments that tinnitus patients seldom receive a prognosis since there are no longitudinal studies that would inform on the natural history of the condition. Therefore, patient queries about whether tinnitus will worsen in time by getting louder, by the addition of more sounds, by spreading changing from unilateral to bilateral, etc., go unanswered. And, it has been the experience of some members of Tinnitus Talk that tinnitus worsens over time.

CONCLUSIONS

Issue Management - Early entry into the NICE process may have enabled better management of committee member perceptions about tinnitus severity and whether or not psychological treatments benefit all people with tinnitus. It may also avoid the subject of late stage comments being considered out of scope.

Landscape - NICE collected many comments from stakeholders, all of which are posted on their website. Reviewing these might give insight into stakeholder support for or against key issues which in turn might facilitate future interactions or predict responses of a given stakeholder should that issue arise once again. It might also help identify changes in thinking of a specific stakeholder.

Strength of the Evidence - As part of the process, the NICE committee reviewed many scientific publications about tinnitus. Cataloging these papers and NICE's decision to include or exclude the evidence along with any reasons given would be helpful for understanding the strength of the evidence for future responses to researchers or regulators.

TC

 

Extremely informative. The feedback carefully compiled by Tinnitus Hub was very sensible. So it's really disappointing that NICE's response to it was so poor, saying that many of the points were "not a priority", while completely ignoring some others. As one of the largest groups representing tinnitus sufferers, Tinnitus Hub was actually in a much better position than NICE to decide what was and what wasn't a priority for tinnitus sufferers.

Frankly a lot of this is pretty much a kick in the face for tinnitus sufferers.

 

@david c

Yes, thanks to @Candy the comments from Tinnitus Hub were honest and did an excellent job of representing the concerns of people with tinnitus.

As you know, Tinnitus Hub only recently became a stakeholder, but the NICE development process for the Tinnitus Guideline has been ongoing since 2017. I take it that the scope and priorities were set by a committee at that time.

A lot has changed since 2017.

Thank you for your support.

TC

 

Thanks for your reply @TuxedoCat. Yes, I found out about the NICE consultation early last year and started highlighting its importance for the UK on Tinnitus Talk. To their credit @Markku and @Hazel took action very quickly to ensure that Tinnitus Talk was a stakeholder and both you and @Candy deserve credit for the hard work you put in formulating the feedback. It's incredibly disappointing that NICE has ignored so much of that feedback.

You are right that the Scope, though not necessarily the priorities, were decided by NICE during an earlier consultation period before Tinnitus Talk was a stakeholder. At that point the BTA was a stakeholder and I have been told in an email by an official worker at NICE that the BTA was asked to consult on their feedback for the scope phase of the consultation. They did not do so. Neither BTA members nor the wider tinnitus community was consulted by them at that stage.