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Feminism: Sex and gender discussions

NICE Evidence Review for Use of Puberty Blockers for GD - Now Released

192 replies

IDontOnlyLikeJazzFunk · 31/03/2021 14:09

now released. NC. The full link is below, this is the summary. It's not looking good.

Discussion
A key limitation to identifying the effectiveness and safety of GnRH analogues for children and adolescents with gender dysphoria is the lack of reliable comparative studies. The lack of clear, expected outcomes from treatment with a GnRH analogue (the purpose of which is to suppress secondary sexual characteristics which may cause distress from unwanted pubertal changes) also makes interpreting the evidence difficult.

The studies included in this evidence review are all small, uncontrolled observational studies, which are subject to bias and confounding, and all the results are of very low certainty using modified GRADE. They all reported physical and mental health comorbidities and concomitant treatments very poorly. All the studies are from a limited number of, mainly European, care facilities. They are described as either tertiary referral or expert services but the low number of services providing such care and publishing evidence may bias the results towards the outcomes in these services only and limit extrapolation.

Many of the studies did not report statistical significance or confidence intervals. Changes in outcome scores for clinical effectiveness and bone density were assessed with regards to statistical significance. However, there is relatively little interpretation of whether the changes in outcomes are clinically meaningful.
In the observational, retrospective studies providing evidence on bone density, participants acted as their own controls and change in bone density was determined between starting GnRH analogues and follow up. Observational studies such as these can only show an association with GnRH analogues and bone density; they cannot show that GnRH analogues caused any differences in bone density seen. Because there was no comparator group and participants acted as their own controls, it is not known whether the findings are associated with GnRH analogues or due to changes over time.

Conclusion
The results of the studies that reported impact on the critical outcomes of gender dysphoria and mental health (depression, anger and anxiety), and the important outcomes of body image and psychosocial impact (global and psychosocial functioning), in children and adolescents with gender dysphoria are of very low certainty using modified GRADE. They suggest little change with GnRH analogues from baseline to follow-up.

Studies that found differences in outcomes could represent changes that are either of questionable clinical value, or the studies themselves are not reliable and changes could be due to confounding, bias or chance. It is plausible, however, that a lack of difference in scores from baseline to follow-up is the effect of GnRH analogues in children and adolescents with gender dysphoria, in whom the development of secondary sexual characteristics might be expected to be associated with an increased impact on gender dysphoria, depression, anxiety, anger and distress over time without treatment. The study by de Vries et al. 2011 reported statistically significant reductions in the Child Behaviour Checklist (CBCL) and Youth Self-Report (YSR) scores from baseline to follow up, which include measures of distress. As the aim of GnRH analogues is to reduce distress caused by the development of secondary sexual characteristics, this may be an important finding.

However, as the studies all lack appropriate controls who were not receiving GnRH analogues, any positive changes could be a regression to mean.

The results of the studies that reported bone density outcomes suggest that GnRH analogues may reduce the expected increase in bone density (which is expected during puberty). However, as the studies themselves are not reliable, the results could be due to confounding, bias or chance. While controlled trials may not be possible, comparative studies are needed to understand this association and whether the effects of GnRH analogues on bone density are seen after they are stopped. All the studies that reported safety outcomes provided very low certainty evidence.

No cost-effectiveness evidence was found to determine whether or not GnRH analogues are cost-effective for children and adolescents with gender dysphoria.

The results of the studies that reported outcomes for subgroups of children and adolescents with gender dysphoria, suggest there may be differences between sex assigned at birth males (transfemales) and sex assigned at birth females (transmales).

arms.nice.org.uk/resources/hub/1070905/attachment

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IDontOnlyLikeJazzFunk · 01/04/2021 11:27

Yes, of course, or it wouldn't be a well-constructed survey. Based on this NICE document, the onus is on those who seek to use the treatment to demonstrate its efficacy.

That would be a sensible move. It is unfortunate to say the least that such poor data and analysis was carried out with the children that have been prescribed this medication so far. That is an enormous missed opportunity.

The Tavistock have had six years of carrying out unevidenced experimental treatment on children. They have totally squandered that time and the (I believe) £1.3 million that they were given to conduct a study to provide some evidence to back up what they were doing.

Where does that leave the whole project? Is it remotely ethical to start a new cohort of children on this treatment in order to study them properly?

How many children should they be allowed to experiment on?

Do they have any degree of competence in research or safeguarding? Apparently not.

OP posts:
RedToothBrush · 01/04/2021 11:33

@IDontOnlyLikeJazzFunk

Yes, of course, or it wouldn't be a well-constructed survey. Based on this NICE document, the onus is on those who seek to use the treatment to demonstrate its efficacy.

That would be a sensible move. It is unfortunate to say the least that such poor data and analysis was carried out with the children that have been prescribed this medication so far. That is an enormous missed opportunity.

The Tavistock have had six years of carrying out unevidenced experimental treatment on children. They have totally squandered that time and the (I believe) £1.3 million that they were given to conduct a study to provide some evidence to back up what they were doing.

Where does that leave the whole project? Is it remotely ethical to start a new cohort of children on this treatment in order to study them properly?

How many children should they be allowed to experiment on?

Do they have any degree of competence in research or safeguarding? Apparently not.

Quite.

Though you'd have thought that they would know who they had treated in the past still.

And you'd also be asking big questions about a) why they couldn't be traced b) there is a low take up on answering questions about follow up.

These kids haven't just disappeared into thin air.

What reasons are there for not engaging past discharge? The omerta itself should set alarm bells. I would imagine this isnt an issue for following up outcomes for other health conditions. People generally want to make the experience of having significant health problems easier to deal with for others behind them.

BeanieSue · 01/04/2021 11:36

I just had a look at the BMJ by Carmicheal et al. that @IDontOnlyLikeJazzFunk links to. Here an exerpt:
"Young people experienced little change in psychological functioning across the study. We found no differences between baseline and later outcomes for overall psychological distress as rated by parents and young people, nor for self-harm. Outcomes that were not formally tested also showed little change."
As far as I can tell there was no change across a range of indicators including the Utrecht gender dysphoria score. Having said that there aren't many participants in the study - 44 at the beginning and only 14 followed up at 36 Months. Does any one know of studies that follows patients that aren't given puberty blockers?

Mumofgirlswholiketoplaywithmud · 01/04/2021 11:38

@rogdmum

Now the BBC need to have a word with their cbeebies / CBBC department where it was sold as an effective safe pause button to the kids watching.
EmbarrassingAdmissions · 01/04/2021 11:46

These kids haven't just disappeared into thin air.

What reasons are there for not engaging past discharge?

I don't know the set-up at GIDS - is it the usual annoying fumble that takes places when paediatric hands-off to adult services? (Affects a wide range of conditions including cancer services.)

GNCQ · 01/04/2021 11:46

WPATH = Jess Bradley the flasher am I right?

Sexnotgender · 01/04/2021 12:06

This is shocking (but not surprising).

Are any major news outlets covering this?

WarriorN · 01/04/2021 12:07

Jess Bradley - a government advisor on women's rights suspended by NUS over indecent blog. Part iii www.mumsnet.com/Talk/womens_rights/3325623-Jess-Bradley-a-government-advisor-on-womens-rights-suspended-by-NUS-over-indecent-blog-Part-iii

Previous threads

R0wantrees · 01/04/2021 12:18

WPATH = Jess Bradley the flasher am I right?

Jess Bradley played a key role in NUS, Action For Trans Health and TELI.

WPATH was originally known as 'Harry Benjamin International Gender Dysphoria Association' The first version of the Standards of Care were published in 1979.
Stephen Whittle (Press For Change founding member) was president 2007–2009
www.wpath.org/about/history

There is some interesting background to Benjamin here:
stoptransingkids.wordpress.com/2020/06/02/who-was-harry-benjamin/

AnyOldPrion · 01/04/2021 12:33

@NotBadConsidering

You can’t placebo puberty blockers because puberty will continue unabated. You can do control group vs puberty blockers group but this possibility has been dismissed as “unethical” because of the “distress” it may cause to not give puberty blockers.

But now we have historical controls: the recent publication of a study that shows if you leave boys alone only a small percentage of them persist.

So now the “unethical” arm of a control group vs puberty blocker group is the puberty blocker group.

There needs to be an immediate moratorium on puberty blockers for moral and ethical reasons, not just legal rulings.

The irony in all this is that back near the beginning, it would have been a wholly sensible idea to create a randomised study with one group on puberty blockers and the other watchful waiting, or whatever was the accepted gold standard at the time. Had that been done, we would have known by now whether puberty blockers are better or worse than the alternative.

It is no longer possible to do such a study, not because watchful waiting would be in any way unethical (compared with PBs it’s the safer option) but because the hype created around PBs mean that they could no longer sell it to parents or rely on children not to convince their parents to go private if they were allocated to the watchful waiting group.

The long term upshot, I suspect, is that puberty blockers will eventually be banned, having never been rationally trialled.

Tibtom · 01/04/2021 12:37

BBC report says a control group would be difficult because you couldn't withhold treatment from one group. That would only be true if the treatment was know to be successful. I have been in a trial where 'watchful waiting' was one of the arms of the trial; it was ethical because there was uncertainty over whether either of the treatments were actually better than watchful waiting.

What is truely unethical here is the way this treatment has been pushed as a cure, and death by suicide the inevitable consequence of withholding, by the worst sort of snakeoil salesmen.

ANewCreation · 01/04/2021 12:42

All roads lead to WPATH but its membership criteria show it is not a medical body, per se which is why it is surprising how much sway it holds. Maybe we could get a group discount...

"Full professional membership is available to professionals working in disciplines such as medicine, psychology, law, social work, counseling, psychotherapy, nursing, family studies, sociology, anthropology, speech and voice therapy and sexology.

Full membership costs $225 (US) per year, and carries voting privileges within the Association."

wpath.org/MembershipInfo

R0wantrees · 01/04/2021 12:47

BBC report says a control group would be difficult because you couldn't withhold treatment from one group.

The BBC article says, " Some argue that carrying out a controlled trial - which would provide better quality evidence - might be difficult because of the potential impact on mental health if treatment is withheld in one group."
Its unfortunate that BBC does not identify who are those making such an argument as clarity is important.

EmbarrassingAdmissions · 01/04/2021 12:50

I have been in a trial where 'watchful waiting' was one of the arms of the trial; it was ethical because there was uncertainty over whether either of the treatments were actually better than watchful waiting.

Agreed.

There are particular form of breast disorder and several haematological conditions where "watchful waiting" is a management option.
In haematology, it can be very important not to jump too soon for some conditions because some of them never manifest, or take up to 20 years to do it. And for those who do progress within a shorter time period, it's important not to expose patients to excess associated toxicities too early in the strategic treatment pathway.

vivariumvivariumsvivaria · 01/04/2021 13:02

WPATH is effectively a patient lobby group. Quite why they have been given so much credence by psychiatrists, medics and scientists is a total mystery to me. No other patient group has achieved this.

InvisibleDragon · 01/04/2021 13:07

I think we are getting towards the point where it becomes clear that adults cannot consent on behalf of their children you receive this treatment.

It was noted on another thread that parents are not given free reign to do what they want with their children. They cannot consent for a child to get a tattoo for example. Nor can they consent for their child to be married. Parental authority over their child is limited.

MaudTheInvincible · 01/04/2021 13:12

@vivariumvivariumsvivaria

WPATH is effectively a patient lobby group. Quite why they have been given so much credence by psychiatrists, medics and scientists is a total mystery to me. No other patient group has achieved this.

The type of activism surrounding this patient group is not a million miles away from the types of groups attracted by the cases of Charlie Gard and Alfie Evans, imo. I see the same type of discourse and narrative being used here.

WarriorN · 01/04/2021 13:14

According to twitter (mimmymummy), "Susie Green was chosen by WPATH as the only non-medical/research contributor to the Children’s chapter" (in reply to a tweet by Helen Watts of girl guiding.)

4thwavenow.com/2017/10/21/should-mermaids-be-permitted-to-influence-uk-public-policy-on-trans-kids/

NICE Evidence Review for Use of Puberty Blockers for GD - Now Released
Thingybob · 01/04/2021 13:20

WPATH is effectively a patient lobby group

I don't agree with that statement as most WPATH members seem to be professionals in 'gender medicine'. I do however accept that many members appear to have vested interests.

vivariumvivariumsvivaria · 01/04/2021 13:26

Well, I mean that they have "patients" (for want of a better word) in positions of authority within the organisation. Who then steer the approach, which has massive influence in the NHS and government and organisations.

Everything else in health care works from evidence first, not from patient desire first.

I genuinely can't think of any other field of healthcare where the patient/client is given such authority. THey'll listen to patient experts, they'll consult and work with them, but, the decision making is firmly based on evidence, not on what the patient believes they need.

DadJoke · 01/04/2021 13:29

@R0wantrees

BBC report says a control group would be difficult because you couldn't withhold treatment from one group.

The BBC article says, " Some argue that carrying out a controlled trial - which would provide better quality evidence - might be difficult because of the potential impact on mental health if treatment is withheld in one group."
Its unfortunate that BBC does not identify who are those making such an argument as clarity is important.

I think the BBC are relying in the NICE document, which says:

"There may also be ethical issueswith a ‘no treatment arm’ in comparative trials of GnRH analogues, where there may be poor mental health outcomes if treatment is withheld."

It goes on to say:

"However, the use of an active comparator such as close psychological support may reduce ethical concerns in future trials."

Manderleyagain · 01/04/2021 13:32

Is NICE for the whole of the UK, or it only England and Wales? The clinic in Glasgow didn't change anything in response to Bell because it was English high court, but will they have to respond to this?

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