NICE Tinnitus Assessment and Management Guideline — Feedback Committee

This is a really big deal thing!!

Can you guys use those of us in the United States for feedback to those who are on committees?

Thanks for explaining this NICE organization so well. I was a bit confused what it actually meant.

 

@david c What’s happening with the NICE guidelines and Tinnitus Talk input - I have a few “tips” on how they could make the pathway more humane. My last few weeks you couldn’t make up.

 

Ditto for me, is there anything those of us in the US can do to help?

I soooooooooo hope this is happening. I was away from Tinnitus Talk for awhile and when I read @Hazel's weekly updates, I didn't see any mention of NICE.

Tuxedo

 

Thanks for the update @Markku and @Hazel. Got myself a little nervous there.

 

The BTA posted on Twitter that you can comment on the guidelines for the assessment and management of tinnitus developed by NICE at the Tinnitus Expo.

From the BTA homepage:
NICE Guidelines Consultation

• The National Institute for Health and Care Excellence (NICE) have developed guidelines for the assessment and management of tinnitus. You can read about the process here.
• There is a consultation period where stakeholders can respond to the guidelines, the British Tinnitus Association is able to feedback on the guidelines and there will be opportunity at the Expo for the tinnitus community to give their comments on the guidelines.
• There will be a stall at the Expo in the upper level of the exhibitor area where you can submit your feedback (this will not be the only opportunity for people to pass comment to the BTA on this).

 

This is an important development. But I think it's fair to say that it hasn't come about without a lot of pressure being put on the BTA. Earlier BTA webpages about the Tinnitus Expo had contained no reference at all to the NICE consultation. And the BTA had failed to consult any of its members in the first stage of the NICE consultation (scoping).

So what changed? Firstly, I challenged @David via Tinnitus Talk about the BTA's lack of involvement of their members in the NICE consultation. Secondly I and friends of mine personally wrote to those in the BTA responsible for organising the Tinnitus Expo to ask why the NICE consultation did not feature in their plans. This pressure has at last led to a positive result.

For Tinnitus Talk members, we would love to get your feedback on the NICE tinnitus guideline via Tinnitus Talk which is a stakeholder, and information will be given about how to do this when the consultation starts in September. But for UK Tinnitus Talk members, feel free to give your feedback to the BTA also. As tinnitus sufferers you are not restricted in the number of stakeholders to which you can provide feedback.

 

NICE work, you guys! (Pun intended, sorry I couldn't resist.)

 

I came to this very late but if there is still too big a load and there are any docs I can help with, I'm happy to do so.

 

Yes, that would be great!

Please follow the links on @Hazel's previous post and you'll be able to read the relevant papers on NICE's website. There’s a 98 page one which I’m happy to go through but the rest are shorter and it would be useful to get some feedback. You probably don't need to go through all the Minutes.

 

I'm currently trying to write a summary about current and upcoming tinnitus treatments (mostly upcoming treatments). It's far from finished, but could you use that for a guideline? I eventually plan to send it to the Swiss tinnitus league so that our doctors at least have a clue about research (I guess at best 1% of ENTs have heard of Lenire)...

 

@Candy, @Hazel

OK Guys, I'm trying to get on the same page with everyone.

From Hazel's first post, I've printed off the following

• How We Develop NICE Guidelines
• NICE guideline - Hearing loss in adults: assessment and management
• National Institute for Health Care Excellence - Guideline Scope, Tinnitus: assessment and management

Are there any other documents I should have?

From How We Develop NICE Guidelines, it appears that the development of the tinnitus guideline is at Step 2 Scope Produced and I should now read more about stakeholders and guideline developers on the NICE website.

Question - Are we, the Stakeholders, to now provide comment on the Scope document or something else or in addition?

Someone please let me know if I am in the right place and on the right track here.

Many Thanks. TC

 

On the scope document - I’m reading the 94 page one in which other stakeholders are giving their opinions too - some is good, some I don’t agree with...

 

Hi Hazel,

I can help with the Functional Committee if it’s not too late.

Julie

 

Hi Hazel

Can I join the committee?

Paul Myles

 

Posting this here to bump the thread.

NICE calls for further research on management options for tinnitus
Higher quality evidence would allow NICE to make recommendations on a range of therapies that could help people with tinnitus.

NICE’s new draft guideline covers the assessment and management of tinnitus, which refers to the sensation of noises in the ears or head that do not come from an outside source.

Tinnitus is sometimes associated with problems with concentrating, listening or sleeping and for some people it can have a significant impact on their mental wellbeing. To address these symptoms, the draft guideline advises healthcare professionals to develop a management plan with the patient to explore different approaches that may help.

For example, psychological therapies, such as cognitive behavioural therapy (CBT), are recommended for people with tinnitus that causes them distress. For people with tinnitus-related hearing loss, hearing aids are recommended.

The committee was unable to recommend the use of neuromodulation therapies to control the symptoms of tinnitus, as there was not enough evidence that showed how well they work. These devices aim to reduce symptoms by applying electrical, acoustic and/or magnetic energy to the head or neck. Instead, neuromodulation therapies have formed one of the committee’s key recommendations for further research.

Dr Paul Chrisp, director of the Centre for Guidelines at NICE, said: “The type and severity of tinnitus varies from person to person, and there is no single approach that works for everyone. Further research on treatments such as neuromodulation would allow us to make recommendations on a greater range of options that could potentially benefit people with tinnitus.”

Other recommendations for research include gathering evidence on the combined use of tinnitus support with sound therapy, which aims to use different sounds to reduce tinnitus awareness, and the clinical and cost effectiveness of psychological therapies for children and young people.

 

So they just want to figure out how to better offer management strategies? A range of therapies? What therapies?

 

Thank you for posting this, Autumnly!

Tinnitus Hub is a stakeholder and has a newly formed Feedback Committee that will review and coordinate the Hub's response to the draft guideline that is now available for consultation. The Committee will be meeting via Skype on 29 September.

In the meantime, everyone is encouraged to read and become familiar with the guideline and to post comments here if you wish. If you are a citizen of the UK, please mention that in the post.

Many thanks, TC

 

In research the very first thing was CBT. That's where I'd start with change. I saw neuromodulation around number 5. At this time, if they are prioritized in anyway, that should be number 1 for research. And if the research shows devices like Lenire works, it should also be number 1 for treatment.

 

Not from the UK.

Page 3 / 1.1.2:
"rarely associated with an underlying physical or mental health problem“ - Do they mean things like tumors when talking about "physical health problem“? Then I’d agree with this statement but I think the connection with hearing loss should be explained (though they talk about what causes it in 1.1.3)

Page 4 / 1.2.1:
People with acute tinnitus should be listed here as well (to be seen within a maximum of 24-48 hours) because early interventions such as steroid injections could still help.

Page 7 / 1.3.3:
Other tests/procedures to avoid could be: Tympanometry, Electrocoleography, Caloric Test, Syringing Ear Wax Removal, Microsuction, cVEMP/VEMP

Page 8 / 1.3.5:
They wrote "offer MRI to people with non-pulsatile tinnitus“ but we know MRIs can temporarily and permanently spike tinnitus and hyperacusis. Patients should be educated about those risks and recommended proper hearing protection.

Page 11:
Their definition of tinnitus-related distress seems to lack something… Tinnitus distress for me can also include functional disruption (not being able to concentrate, memory issues, etc).

Page 11,12 / Research recommendations:
Can they focus more on medical treatments instead of CBT, relaxation techniques and sound therapy? Do they also mean bimodal neuromodulation when talking about neuromodulation or are they talking about things like notched music therapy? I know they just want to be able to offer people something but the main focus should be on finding medical treatments.

There’s really not much to say, we just don’t have medical treatments for tinnitus (except for Lenire) and it seems like NICE is simply trying to offer patients something so the main focus is on CBT and relaxation techniques.

 

Hi

Will read on laptop in lunch break and give feedback.

Quick question - is hyperactive mentioned at all in the guidelines? I think the percentage of tinnitus sufferers with hyperacusis is quite high, and for many of us it is the bigger concern.

Thanks.

 

For comment #3, It's my understanding that lack of sleep increases tinnitus not because the brain hasn't reset, but because lack of sleep causes inflammation throughout the body which affects tinnitus volume.

Also for comment #3, is that a typo in the last line "memberso" ?

One additional recommendation to help with care is that for those who have debilitating tinnitus be considered for review for a automobile Blue Badge for disabled parking so that they can be close to entrances and be exposed to the least amount of noise exposure as they would be at risk for further trauma in parking lots. This is what my ENT did for me and it allowed me to go to more locations I couldn't go to before including certain doctors offices.