Final report – FAQs
Final report FAQs
Following publication of the final report there have been a number of questions and points for clarification about the findings and recommendations. We have collated those questions, along with our answers, on this page.
No, the approach to the assessment of study quality was the same as would be applied to other areas of clinical practice – the bar was not set higher for this Review.
Clarification:
The same level of rigour should be expected when looking at the best treatment approaches for this population as for any other population so as not to perpetuate the disadvantaged position this group have been placed in when looking for information on treatment options.
The systematic reviews undertaken by the University of York as part of the Review’s independent research programme are the largest and most comprehensive to date. They looked at 237 papers from 18 countries, providing information on a total of 113,269 children and adolescents.
All of the University of York’s systematic review research papers were subject to peer review, a cornerstone of academic rigour and integrity to ensure that the methods, findings, and interpretation of the findings met the highest standards of quality, validity and impartiality.
No. There were no randomised control studies identified in the systematic reviews, but other types of studies were included if they were well designed and conducted.
Clarification:
The Review commissioned the University of York to undertake an independent research programme to ensure the work of the Review and its recommendations were informed by the most robust existing evidence. This included a series of systematic reviews which brought together, analysed and evaluated existing evidence on a range of issues relating to the care of gender-questioning children and young people, including epidemiology, treatment approaches and international models of current practice.
Randomised control trials are considered the gold standard in relation to research, but there are many other study designs that can give valuable information. Explanatory Box 1 (pages 49-51 of the final report) discusses in more detail the different kinds of studies that can be used, and how to decide if a study is poorly designed or biased.
Blinding is a separate issue. It means that either the patient or the researcher does not know if the patient is getting an active treatment or a ‘control’ (which might be another treatment or a placebo). Patients cannot be blinded as to whether or not they are receiving puberty blockers or masculinising / feminising hormones, because the effects would rapidly become obvious. Good RCTs can be conducted without blinding.
The University of York’s systematic review search did not identify any RCTs, blinded or otherwise, but many other studies were included. Most of the studies included were called ‘cohort studies’. Well-designed and executed high quality cohort studies are used in other areas of medicine, and the bar was not set higher for this review; even so the quality of the studies was mostly only assessed as moderate.
No. Studies were identified for inclusion in the synthesis (conclusions) of the systematic reviews on puberty blockers and masculinising/feminising hormones on the basis of their quality. This was assessed using a standard quality assessment tool appropriate to the types of study identified. All high quality and moderate quality reviews were included in the synthesis of results. This totalled 58% of the 103 papers.
Clarification:
The Newcastle-Ottawa scale (a standard appraisal tool) was used to compare the studies. This scores items such as participant selection, comparability of groups (how alike they are), the outcomes of the studies and how these were assessed (data provided and whether it is representative of those studied). High quality studies (scoring >75%) would score well on most of these items; moderate quality studies (scoring >50% – 75%) would miss some elements (which could affect outcomes); and low-quality studies would score 50% or less on the items the scale looked at. A major weakness of the studies was that they did not have adequate follow-up – in many cases they did not follow young people for long enough for the long-term outcomes to be understood.
Because the ranking was based on how the studies were undertaken (their quality and execution), low quality research was removed before the results were analysed as the findings could not be completely trusted. Had an RCT been available it would also have been excluded from the systematic review if it was deemed to be of poor quality.
The puberty blocker systematic review included 50 studies. One was high quality, 25 were moderate quality and 24 were low quality. The systematic review of masculinising/feminising hormones included 53 studies. One was high quality, 33 were moderate quality and 19 were low quality.
All high quality and moderate quality reviews were included, however as only two of the studies across these two systematic reviews were identified as being of high quality, this has been misinterpreted by some to mean that only two studies were considered and the rest were discarded. In reality, conclusions were based on the high quality and moderate quality studies (i.e. 58% of the total studies based on the quality assessment). More information about this process in included in Box 2 (pages 54-56 of the final report)
No. The Review has not commented on the use of masculinising/feminising hormones on people over the age of 18. This is outside of the scope of the Review. The Review has not stated that Gillick competence should be overturned.
The Review has recommended that:
“NHS England should ensure that each Regional Centre has a follow through service for 17-25-year-olds; either by extending the range of the regional children and young people’s service or through linked services, to ensure continuity of care and support at a potentially vulnerable stage in their journey. This will also allow clinical, and research follow-up data to be collected.”
This recommendation only relates to people referred into the children and young people’s service before the age of 17 to enable their care to be continued within the follow-through service up to the age of 25.
Clarification:
Currently, young people are discharged from the young people’s service at the age of 17, often to an adult gender clinic. Some of these young people have been receiving direct care from the NHS gender service (GIDS as was) and others have not yet reached the top of the waiting list and have “aged out” of the young people’s service before being seen.
The Review understands that this is a particularly vulnerable time for young people. A follow-through service continuing up to age 25, would remove the need for transition (that is, transfer) to adult services and support continuity of care and continued access to a broader multi-disciplinary team. This would be consistent with other service areas supporting young people that are selectively moving to a ‘0-25 years’ service to improve continuity of care.
The follow-through service would also benefit those seeking support from adult gender services, as these young people would not be added to the waiting list for adult services and, in the longer-term, as more gender services are established, capacity of adult provision across the country would be increased.
People aged 18 and over, who had not been referred to the NHS children and young people’s gender service, would still be referred directly to adult clinics.
No. Puberty blocker medications are used to address a number of different conditions. The Review has considered the evidence in relation to safety and efficacy (clinical benefit) of the medications for use in young people with gender incongruence/gender dysphoria.
The Review found that not enough is known about the longer-term impacts of puberty blockers for children and young people with gender incongruence to know whether they are safe or not, nor which children might benefit from their use.
Ahead of publication of the final report NHS England took the decision to stop the routine use of puberty blockers for gender incongruence / gender dysphoria in children. NHS England and National Institute for Health and Care Research (NIHR) are establishing a clinical trial to ensure the effects of puberty blockers can be safely monitored. Within this trial, puberty blockers will be available for children with gender incongruence/ dysphoria where there is clinical agreement that the individual may benefit from taking them.
Clarification:
Puberty blockers have been used to suppress puberty in children and young people who start puberty much too early (precocious puberty). They have undergone extensive testing for use in precocious puberty (a very different indication from use in gender dysphoria) and have met strict safety requirements to be approved for this condition. This is because the puberty blockers are suppressing hormone levels that are abnormally high for the age of the child.
This is different to stopping the normal surge of hormones that occur in puberty. Pubertal hormones are needed for psychological, psychosexual and brain development, and there is not yet enough information on the risks of stopping the influence of pubertal hormones at this critical life stage.
When deciding if certain treatments should be routinely available through the NHS it is not enough to demonstrate that a medication doesn’t cause harm, it needs to be demonstrated that it will deliver clinical benefit in a defined group of patients.
Over the past few years, the most common age that young people have been receiving puberty blockers in England has been 15 when most young people are already well advanced in their puberty. The new services will be looking at the best approaches to support young people through this period when they are still making decisions about longer-term options.
The Review has advised that a more cautious approach around social transition needs to be taken for pre-pubertal children than for adolescents and has recommended that:
“When families/carers are making decisions about social transition of pre-pubertal children, services should ensure that they can be seen as early as possible by a clinical professional with relevant experience.”
Parents are encouraged to seek clinical help and advice in deciding how to support a child with gender incongruence and should be prioritised on the waiting list for early consultation on this issue. This should include discussion of the risks and benefits and the voice of the child should be heard. It will be important that flexibility is maintained, and options remain open.
Clarification:
Although the University of York’s systematic review found that there is no clear evidence that social transition in childhood has positive or negative mental health outcomes, there are studies demonstrating that for a majority of young children presenting with gender incongruence, this resolves through puberty. There is also evidence from studies of young people with differences of sex development (DSD) that sex of rearing seems to have some influence on eventual gender outcome, and it is possible that social transition in childhood may change the trajectory of gender identity development for children with early gender incongruence. Living in stealth from early childhood may also lead to stress, particularly as puberty approaches.
There is relatively weak evidence for any effect of social transition in adolescence. The Review recognises that for adolescents, exploration is a normal process, and rigid binary gender stereotypes can be unhelpful. Many adolescents will go through a period of gender non-conformity in terms of outward expressions (e.g. hairstyle, make-up, clothing and behaviours). They also have greater agency in how they present themselves and in their decision-making.
Young people and young adults have spoken positively about how social transition helped to reduce their gender dysphoria and feel more comfortable in themselves. They identified that space to talk about socially transitioning and how to handle conversations with parents/carers and others would be helpful. The Review has therefore advised that it is important to try and ensure that those already actively involved in the young person’s welfare provide support in decision making and that plans are in place to ensure that the young person is protected from bullying and has a trusted source of support.
Further detail can be found in Chapter 12 of the Final Report.
Yes, the Review has been underpinned by an extensive programme of proactive engagement, which is described in Chapter 1 of the report. The Review has met with over 1000 individuals and organisations across the breadth of opinion on this subject but prioritised two categories of stakeholders:
- People with relevant lived experience (direct or as a parent/carer) and organisations working with LGBTQ+ children and young people generally.
- Clinicians and other relevant professionals with experience of and/ or responsibility for providing care and support to children and young people within specialist gender services and beyond.
A mixed-methods approach was taken, which included weekly listening sessions with people with lived experience, 6-weekly meetings with support and advocacy groups throughout the course of the Review, and focus groups with young people and young adults.
Reports from the focus groups with young people with lived experience are published on the Review’s website and the learning from these sessions and the listening sessions are represented in the final report.
The Review also commissioned qualitative research from the University of York, who conducted interviews with young people, young adults, parents and clinicians. A summary of the findings from this research is included as appendix 3 of the final report.
Whilst the Review’s terms of reference do not include consideration of the proposed legislation to ban conversion practices, it believes that no LGBTQ+ group should be subjected to conversion practice. It also maintains the position that children and young people with gender dysphoria may have a range of complex psychosocial challenges and/or mental health problems impacting on their gender-related distress. Exploration of these issues is essential to provide diagnosis, clinical support and appropriate intervention.
The intent of psychological intervention is not to change the person’s perception of who they are but to work with them to explore their concerns and experiences and help alleviate their distress, regardless of whether they pursue a medical pathway or not. It is harmful to equate this approach to conversion therapy as it may prevent young people from getting the emotional support they deserve and make clinicians fearful of providing this group of children and young people the same care as is afforded to other children and young people.
No formal science-based training in psychotherapy, psychology or psychiatry teaches or advocates conversion therapy. If an individual were to carry out such practices they would be acting outside of professional guidance, and this would be a matter for the relevant regulator.
Dr Cass met with support and advocacy organisations on 17 April 2024. The organisations shared concerns about the misinformation being spread about the contents of the report and what it meant for the children and young people seeking support. Dr Cass responded to a number of questions that young people and their families had raised with the organisations. Following the meeting the Kite Trust (which is a small, locally focused youth organisation) produced a myth buster to support their youth workers responding to questions from the young people they support. The Kite Trust sent this through to the Review team (on 17 April) but did not state the intention to publish. The myth buster was published on their website the day after the meeting (18 April) before the Review had reviewed its contents and the Review did not sign off the document.
Sadly, this was quickly picked up on social media and was used to attack the credibility of the Review and the integrity of the Kite Trust. The Review understands that there was no intention from the Kite Trust (or any of the other organisations present) to misrepresent the meeting. While the language used was not that which the Review uses, the Kite Trust’s statement was not represented as verbatim comments from Dr Cass. Their intention was to correct some misconceptions, it was written to be accessible to the young people they support who are anxious and worried by what they are hearing. The Review has issued its own FAQs, which represents the Reviews position on the matters raised.
The Kite Trust and other support and advocacy organisations have engaged with the Review in a positive and constructive way. The statement was intended to address misconceptions and was driven by concern for the young people at the heart of the Review.