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98%: Is misinformation being spread about a review of trans youth medicine?

98%: Is misinformation being spread about a review of trans youth medicine?

Released Saturday, 20th April 2024
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98%: Is misinformation being spread about a review of trans youth medicine?

98%: Is misinformation being spread about a review of trans youth medicine?

98%: Is misinformation being spread about a review of trans youth medicine?

98%: Is misinformation being spread about a review of trans youth medicine?

Saturday, 20th April 2024
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people today. people today. Hello,

1:13

and thanks for downloading the More or

1:16

Less podcast. We are your weekly guide

1:18

to the numbers in the news and

1:20

in life, and I'm Kate Lambeau. Last

1:24

week saw the publication of the

1:26

CAS review, a landmark independent review

1:28

in England of gender identity services

1:30

for children and young people. Now

1:33

these services treat those who feel

1:35

a difference between their experienced gender

1:38

and registered sex. Many would identify

1:40

as transgender. The review

1:42

came after years of controversy centered

1:44

around medical treatment, including drugs which

1:46

delay the onset of puberty or

1:48

the use of hormones like testosterone

1:50

or oestrogen. The CAS review

1:53

found children and young people had been

1:55

let down by a lack of research

1:57

and remarkably weak evidence on medical interventions.

2:00

in this area. This work

2:02

has been extremely influential. The

2:04

National Health Service in England has

2:06

stopped prescribing puberty blockers to these

2:08

groups unless they're part of a

2:10

research project. But before the

2:13

CAST review was even published, an

2:15

idea was spreading on Twitter that

2:17

it was all based on biased

2:19

information. The CAST review only managed to

2:21

get to its conclusion by ignoring 98% of

2:24

the available evidence. Do not listen to the

2:27

CAST review. They literally threw out 98% of

2:29

evidence. CAST must be made

2:32

to answer tomorrow why someone

2:34

who understands pediatric research methodology

2:36

chose to reject 98% of

2:40

it when concerning trans young people.

2:43

This idea that 98% of

2:45

the evidence was ignored or dismissed has

2:47

been repeated again and again. So

2:50

is it true? That's completely

2:52

incorrect. This is Dr Hilary

2:54

Cass, a former president of the

2:56

Royal College of Pediatrics and Child Health,

2:59

and she was asked by the NHS

3:01

to chair the independent review. As

3:03

part of that work, Dr Cass commissioned

3:05

academics at the University of York to

3:08

carry out a series of systematic reviews

3:10

which bring together, analyse and weigh up

3:12

existing research. So what

3:15

the systematic reviews did

3:18

was to evaluate all

3:20

of the evidence. And

3:23

there were only two studies that

3:25

were deemed to be high

3:27

quality. Across two reviews, one into the

3:29

use of puberty blockers and one the

3:32

use of hormone treatments, there were 103

3:34

scientific papers

3:36

analysed. So 2% were

3:38

considered high quality and

3:41

98% not. But all the

3:43

other studies weren't just thrown out. There were

3:45

quite a number of studies that were considered

3:47

to be moderate quality

3:49

and those were all included

3:52

in the analysis. So nearly

3:54

60% of the studies were actually

3:57

included in what's called the synapse. That's

4:01

the conclusion bit at the end. Now

4:03

this is where another criticism comes in. Many

4:06

people claimed on social media that the

4:08

reason such a small proportion of studies

4:11

were considered high-quality research was because only

4:13

one type of study was acceptable. The

4:16

so-called gold standard of

4:18

research, double-blind, randomized control

4:20

trials. These are where

4:22

patients are randomly assigned to either a

4:24

treatment or a placebo group, getting either

4:27

a medicine or nothing, and neither the

4:29

patient nor the doctor knows which one

4:31

they're receiving. That is hard

4:33

to imagine in this context, as

4:36

Hilary Cass agrees. Obviously in

4:38

this area of medicine, young

4:40

people can't be blinded to

4:42

whether they are on puberty

4:44

blockers or masculinizing or feminizing

4:46

hormones because it rapidly becomes

4:49

obvious to them, but that of itself

4:51

is not an issue because there are

4:53

many other areas where that would apply

4:55

if you were doing a trial, say,

4:57

of acupuncture. People would know exactly what

5:00

treatment that they were getting. So

5:02

were these near impossible criteria used

5:05

in the systematic reviews? Well,

5:07

no. Professor Ketheryn Hewitt was in

5:10

charge of the team at York University

5:12

which conducted the research. She says

5:14

they found no randomized control

5:16

trials at all, so they decided

5:18

quality in a different way. We

5:21

didn't identify any randomized control

5:23

trials, but we had

5:26

non-randomized studies. So we used

5:28

an appropriate tool for those

5:30

types of studies. So it's

5:33

called the Newcastle Ottawa Scale,

5:36

and that's appropriate for

5:38

non-randomized studies. And

5:40

what does that take into account? What's

5:42

that telling you to look at? So

5:44

it kind of broadly has a look

5:46

at how the people were selected for

5:48

the study, the comparability

5:50

of the groups, so how alike

5:52

they are, and the

5:55

outcomes and how those were

5:57

assessed, so what data is

5:59

provided. And is it representative

6:02

of the people that it should be about? High

6:05

quality studies, Catherine says, would account

6:07

for differences between groups and have

6:09

long-term follow-up. Moderate quality

6:11

studies would miss a few things which

6:13

could affect the outcome. And low quality

6:15

studies reported less than half of the

6:17

things they were looking for. One of

6:19

the studies that was ranked as low

6:22

quality when we did the quality appraisal

6:24

was a study in a single

6:26

clinic in America. And

6:29

there was no information given about the

6:31

number of people that were not

6:34

taking part in the study. There

6:36

wasn't any information given about how

6:38

the data was collected and how

6:40

many people completed that. It

6:43

only focused on birth registered females as

6:45

well. So it was a very

6:47

selective group of individuals.

6:50

We don't know how many that represented

6:52

because they didn't say, and we

6:54

don't know how many people the follow-up

6:56

was done for. That

6:59

missing information meant there was a risk of

7:01

a skewed result. And because

7:03

this ranking was based on how

7:05

the research was done, Professor Hewitt

7:07

says low quality research was removed

7:09

before the results were analysed, precisely

7:11

because they couldn't be completely trusted.

7:14

If you include low quality

7:16

evidence, it can tell you

7:18

an answer and you're not sure if you should believe

7:20

that answer or not, because you

7:22

don't know, because the methods are

7:25

either unclear or just not that

7:27

good. The bottom line is

7:29

that Hewitt's team trawled through a lot

7:31

of research. They used a standard system

7:33

to decide what was good enough quality

7:35

and removed the lowest quality. Here's

7:37

Dr. Hilary Cass again. If

7:40

we use low quality

7:42

studies, then what we are doing

7:45

is subjecting these young people to

7:47

a lower standard of evidence and

7:49

a lower standard of care than

7:52

any other child or young person. And

7:55

if that happened with a treatment

7:57

for asthma or cancer or anything

8:00

else parents would be outraged

8:02

that their child had been

8:04

subjected to a treatment on the basis

8:06

of very weak evidence. This

8:08

was a key part of our conclusion. Young

8:11

people had been let down by the

8:13

poverty of the evidence. This particular

8:15

body of evidence is

8:18

uniquely poor compared to almost

8:20

any other body of evidence

8:22

that the University of York

8:24

has looked at. And the

8:27

biggest weakness of the studies

8:29

was not that they want randomised

8:32

control trials. The biggest weakness was

8:34

that they just didn't follow young

8:37

people through for long enough for us

8:39

to really understand the long-term outcomes. We've

8:42

talked about several issues of disinformation.

8:44

How have you felt when you've

8:46

seen these criticisms being levied at

8:48

your report? I felt very angry

8:50

because I think

8:53

that in many instances where

8:56

people have been looking after these

8:58

young people clinically, whether or

9:00

not they've been doing the right thing, they

9:02

have been trying to do their best, many

9:05

of them, for these young people. Adults

9:09

who deliberately spread

9:12

misinformation about

9:14

this topic are

9:16

putting young people at risk.

9:18

And in my view, that

9:20

is unforgivable. So we're

9:23

certainly not saying that no one

9:25

is going to benefit from these

9:27

treatments. And I

9:30

myself have spoken to young

9:32

people who definitely do appear

9:34

to have benefited. And that's

9:37

been really good to hear

9:39

from them. But what

9:41

we need to understand is what's happening

9:43

to the majority of people

9:46

who've been through these treatments and

9:48

we just don't have that data.

9:51

I certainly wouldn't want to

9:53

embark on a treatment where somebody couldn't

9:55

tell me with any

9:57

accuracy what percentage chance they're going to get.

10:00

there was of it being successful,

10:02

and what the possibilities were

10:04

of harms or side effects. So

10:07

where did this idea that 98% of

10:09

the research was thrown out come from in

10:11

the first place? We've traced

10:14

it back. And actually, the earliest mentions

10:16

come from ex or Twitter users on

10:18

the day before the Kes Review was

10:20

published, responding to a post which included

10:22

a screen grab of a press release.

10:25

A press release sent out by

10:27

the British Medical Journal, or BMJ,

10:29

which published the academic papers. That

10:33

document noted that in one review, only

10:35

one of 53 studies

10:37

was of sufficient high quality.

10:40

The other review, it said, had looked at 50 studies.

10:43

One was high quality. No

10:45

mention was made at the much larger

10:47

pool of moderate quality research, which was

10:50

also included in the conclusions. Users

10:52

saw the screen grab, did the maths,

10:55

and jumped to the wrong conclusion, that

10:57

98% of the research

10:59

hadn't made the grade. Cameron

11:01

Abassie is the editor-in-chief of the

11:03

BMJ. That was really

11:05

reflecting the state of the evidence. And I

11:08

think that's the key message

11:10

here, which is that actually, there

11:13

aren't many good quality studies. And

11:15

yes, there were 34

11:18

moderate quality studies in the

11:21

hormone systematic review and 26

11:23

moderate quality studies in the

11:25

puberty blocker review. But that

11:27

nuance, no, that wasn't in the press

11:30

release. But it's a matter of how

11:32

you interpret and understand systematic

11:34

reviews. I think if you understand

11:37

what a systematic review is, you know

11:39

that the other studies were evaluated as

11:41

normal. And it was just a statement

11:44

of the facts. Knowing

11:46

that most people don't know about systematic

11:48

reviews out there in the world, do

11:50

you think this confusion was avoidable? I'm

11:53

not sure about that, because I think there

11:55

are people who aren't very keen to

11:57

accept the findings of the cash review.

12:00

and methodological issues

12:02

and questions around the methods were

12:05

always going to be raised. And

12:07

we did, of course, refer back to

12:09

the full papers. So if people

12:12

wanted to understand exactly

12:14

the detail of those

12:16

reviews, they needed to refer back to the

12:18

papers. But I'll say again, I mean, the

12:20

important message here is that the

12:23

level of evidence to address both

12:25

of those questions isn't

12:27

strong and it's problematic. And

12:30

that is the message that needed to be highlighted in

12:32

the press release, and it was. All

12:35

in all, it's not true that the CAF review

12:38

overlooked 98% of relevant research, but the systematic

12:41

reviews which informed CAF found around

12:43

40% of the research was low

12:45

quality and as a result was

12:48

not used to form the conclusions. That's

12:51

it for this week. Please do get

12:53

in touch if you see a number

12:55

you think we should look at. The

12:57

email is more or less at bbc.co.uk.

13:00

We'll be back next week. Until then,

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