Guest post: The new Cass Review

The final version of the Cass Review (formally the “Independent Review of Gender Identity Services for Children and Young People”) was issued on April 10. Here’s a brief summary by the CBC, noting that doctors and others have griped about it:

A long-anticipated — and contentious — national review of gender-affirming care for youth in England was released last week, resulting in headlines across the U.K. saying that gender medicine is “built on shaky foundations.”

The Cass Review, chaired by pediatrician Hilary Cass, was commissioned by England’s National Health Service (NHS) in 2020.

Even before the final report was published, the review has led to significant changes for youth gender medicine in England, where the debate over transgender care has become increasingly heated, with complaints of both long waiting lists and medical treatments being too readily available to youth.

Last month, the Cass Review findings led to a ban on the prescription of puberty-suppressing hormones except for youth enrolled in clinical research.

That’s a move away from the standard of care supported by many international medical bodies, including the Canadian Pediatric Society (CPS), the American Academy of Pediatrics and World Professional Association for Transgender Health. Though several European countries including Sweden have also restricted access to puberty blockers and other medical treatments for youth.

The report cites a systematic review of evidence, commissioned as part of the Cass Review, which found “a lack of high-quality research” that puberty blockers can help young people with gender dysphoria.

While experts in the field say more studies should be done, Canadian doctors who spoke to CBC News disagree with the finding that there isn’t enough evidence puberty blockers can help.

I had no time to read the long report, and didn’t think that just regurgitating a summary for the readers was sufficient. But reader Jez told me he was going through it, and I asked him if he wouldn’t mind writing his take for this site. He kindly agreed, and so, without further ado. . . .

First, though, Jez notes

“The Cass Review’s final report (and its other publications) are available here.

 

THE CASS REVIEW: A READER’S TAKE

by Jez Grove

Since around 2014, the number of children and young people presenting at gender clinics in the Western world has surged and the patient profile has switched dramatically from predominantly pre-pubertal males to teenage females. Both changes are unexplained. The treatment offered to these patients has also significantly shifted: a psychosocial and psychotherapeutic approach has given way to many being offered medical treatment with puberty blockers (gonadotropin-releasing hormone analogues, GnRH) and cross-sex hormones.

In September 2020, Dr Hilary Cass, a retired consultant paediatrician and former President of the Royal College of Paediatrics and Child Health, was appointed to undertake a full review into how NHS England* “should most appropriately assess, diagnose and care for children and young people who present with gender incongruence and gender identity issues [and] to make recommendations on how to improve services […] and ensure that the best model/s for safe and effective services are commissioned”. [Cass Review Final Report, henceforeth “CRFR”, Appendix 1: Terms of Reference]

The Cass Review’s Interim Report (2022) highlighted that a lack of evidence on the medium- and long-term outcomes of the treatments that children and young people were receiving was limiting the advice that the Review could give. In response, it commissioned an independent research programme to provide “the best available collation of published evidence, as well as qualitative and quantitative research to fill knowledge gaps” and set up a Clinical Expert Group to help it interpret the findings. [CRFR, p. 25]

The Interim Review also warned that social transitioning (changing, name, appearance and pronouns, etc.):

. . . .“may not be thought of as an intervention or treatment, because it is not something that happens within health services. However, it is important to view it as an active intervention because it may have significant effects on the child or young person in terms of their psychological functioning. There are different views on the benefits versus the harms of early social transition. Whatever position one takes, it is important to acknowledge that it is not a neutral act, and better information is needed about outcomes”. [Cass Review Interim Report, henceforth”CRIR”; pp 62-63]

The findings of the Interim Report led to the closure of the Gender Identity Development Service (GIDS) last month.

Last week, the Cass Review published its Final Report. Dr Cass begins it with an apparent effort to placate her critics; her opening sentences read:

“This Review is not about defining what it means to be trans, nor is it about undermining the validity of trans identities, challenging the right of people to express themselves, or rolling back on people’s rights to healthcare. It is about what the healthcare approach should be, and how best to help the growing number of children and young people who are looking for support from the NHS in relation to their gender identity”. [CRFR, Foreword from the Chair, p. 12]

However, she is not blind to the problems that have developed in this area of healthcare:

“It often takes many years before strongly positive research findings are incorporated into practice. There are many reasons for this. One is that doctors can be cautious in implementing new findings, particularly when their own clinical experience is telling them the current approach they have used over many years is the right one for their patients. Quite the reverse happened in the field of gender care for children. Based on a single Dutch study, which suggested that puberty blockers may improve psychological wellbeing for a narrowly defined group of children with gender incongruence, the practice spread at pace to other countries. This was closely followed by a greater readiness to start masculinising/feminising hormones in mid-teens, and the extension of this approach to a wider group of adolescents who would not have met the inclusion criteria for the original Dutch study. Some practitioners abandoned normal clinical approaches to holistic assessment, which has meant that this group of young people have been exceptionalised compared to other young people with similarly complex presentations. They deserve very much better”. [CRFR, Foreword from the Chair, pp. 13-14]

The problems with the evidence base that sparked the Review persist, with Cass writing that the independent research programme she had commissioned

. . . .“has shown that there continues to be a lack of high-quality evidence in this area and disappointingly […], attempts to improve the evidence base have been thwarted by a lack of cooperation from the adult gender services.  The Review has therefore had to base its recommendations on the currently available evidence, supplemented by its own extensive programme of engagement”. [CRFR, p. 20]

The failure of the UK’s adult gender services to cooperate is perhaps the most shocking revelation in the report. As Cass notes,

“When clinicians talk to patients about what interventions may be best for them, they usually refer to the longer-term benefits and risks of different options, based on outcome data from other people who have been through a similar care pathway. This information is not currently available for interventions in children and young people with gender incongruence or gender dysphoria, so young people and their families have to make decisions without an adequate picture of the potential impacts and outcomes”. [CRFR, p. 33]

A quantitative data linkage study was intended to

. . . “use existing data held by the NHS, including data from GIDS, hospital wards, outpatient clinics, emergency departments and NHS adult GDCs, to track the journeys of all young people (approximately 9,000) referred to the GIDS service through the system to provide a population-level evidence base of the different pathways people take and the outcomes. This type of research is usual practice in the NHS when looking to improve health services and care received.  However, this has not been the case for gender-questioning children and young people and the hope was that this data linkage would go some way to redress this imbalance”. [Cass Review Final Report, p. 190]

Despite its “not particularly unusual” methodology, it took more than a year for the study to receive ethics approval from the Health Research Authority (HRA); Cass considers the “robust scrutiny and consideration [to be] entirely appropriate given the sensitivity of the subject matter”. [Ibid.] The independent research team “undertook stakeholder engagement and developed the patient notifications and communications resources to explain the research and provide information about how to opt-out of the study should an individual choose to do so. […] In January 2024, the Review received a letter from NHS England stating that, despite efforts to encourage the participation of the NHS gender clinics, the necessary co-operation had not been forthcoming”. [Ibid.] Appendix 4 of the Review sets out the details and history of the “thwarted” study.

The proposed linkage study had been complicated by the fact that, uniquely, GIDS patients are issued new National Health Service (NHS) numbers when registering their new gender identity. Cass notes:

“From a research perspective, the issuing of new NHS numbers makes it more difficult to identify the long-term outcomes for a patient population for whom the evidence base is weak”. [CRFR, p. 229]

The UK government had to bring forward a special legislative instrument to facilitate linking the patients’ new and old NHS records; NHS England had vowed to pursue the thwarted research before the special instrument’s powers expire in 2027.

There are other serious unintended consequences of allowing young patients to change their NHS numbers. Cass writes,

“Safeguarding professionals have described a range of situations where this has put children/young people at risk. These include young people attending hospital after self-harm not being identifiable as a child already on a child protection order; records of previous trauma and/or physical ill health being lost; people who do not have parental responsibility changing a child’s name and gender; children being re-registered as the opposite gender in infancy; children on the child protection register being untraceable after moving to a new area”. [CRFR, p. 229]

While Cass has been unable to use a stronger evidence base, she has provided a valuable service in bringing together an independent and thorough assessment of the existing research in areas related to the assessment, diagnosis, and treatment of gender-confused children and young people and suggested a way forward.

The Review gives:

• An overview of the patient profile, including mental health and neurodiversity, adverse childhood experiences, theories about the rise in referrals and the change in case mix, and the weak evidence with regard to suicidality.
• An important appraisal and synthesis of the available international guidelines. Cass notes,

“For many of the guidelines it was difficult to detect what evidence had been reviewed and how this informed development of the recommendations. For example, most of the guidelines described insufficient evidence about the risks and benefits of medical treatment in adolescents, particularly in relation to long-term outcomes. Despite this, many then went on to cite this same evidence to recommend medical treatments.

Alternatively, they referred to other guidelines that recommend medical treatments as their basis for making the same recommendations. Early versions of two international guidelines, the Endocrine Society 2009 and World Professional Association for Transgender Healthcare (WPATH) 7 guidelines influenced nearly all the other guidelines. These two guidelines are also closely interlinked, with WPATH adopting Endocrine Society recommendations, and acting as a co-sponsor and providing input to drafts of the Endocrine Society guideline. WPATH 8 cited many of the other national and regional guidelines to support some of its recommendations, despite these guidelines having been considerably influenced by WPATH 7. The links between the various guidelines are demonstrated in the graphics in the guideline appraisal paper (Hewitt et al., Guidelines 1: Appraisal).

The circularity of this approach may explain why there has been an apparent consensus on key areas of practice despite the evidence being poor.” [Cass Review Final Report, p. 130]

• An overview of the existing clinical approach and clinical management and recommendations to improve them.
• Recommendations for a new service model for NHS England, including follow-through services for 17-25 years-olds to ensure continuity at “a potentially vulnerable stage in their journey” and “allow clinical and research follow-up data to be collected”. [CRFR, p. 225] She also stresses the needs for detransitioners to be supported and warns of the dangers of private healthcare providers outside the NHS not following its policies.
• Finally, she cautions that, while innovation in healthcare is important, there must be a “proportionate level of monitoring, oversight, and regulation that does not stifle progress, but prevents creep of unproven approaches into clinical practice. Innovation must draw from and contribute to the evidence base”. [Cass Review Final Report, p. 231]

To critics who say the Cass Review tells us nothing new, surely the onus is on them to justify continuing to provide children and young people with “gender-affirming care”, care for which we already knew there is no reliable evidence on the medium-and long-term outcomes.

______________________

* Health is devolved in the UK; Scotland, Wales, and Northern Ireland (and indeed all other  healthcare services) are free to ignore the Cass Review’s findings, but may be unwise to do so.