Category Archives: Pediatrics

The Cass Review of gender identity services for children and young people, a recent report in the U.K., has spurred many headlines and much debate, most of which tout the finding of weak evidence for gender-affirming care for children and teenagers. Advocates of such care reject the report as anti-trans, while critics hail it for finally outing such care as pseudoscience. However, much of the noise around gender-affirming care in pediatrics, and this report, is misleading and takes away from the substantive improvements needed to provide the best care for transgender youth, something noted in the reports thoughtful foreword.

The Cass report was commissioned by the U.K.s National Health Service to make recommendations on improving care for children and young people who are questioning their gender identity or experiencing gender dysphoria. The report made eight recommendations on treatment, two of them on medications: puberty blockers and hormones.

While gender-affirming care is not reducible to medications alone, they are the treatments most often singled out by critics. The report determined that the scientific evidence for puberty-blocking medications in youths needs improvement, expressing concern about the potential risks and questioning the benefits for most children. The report didnt say that puberty blockers should not be prescribed to children, but it concluded that they should only be prescribed as part of a clinical trial. The report said that masculinizing or feminizing hormones could be given to people starting at age 16, but it advised extreme caution.

I cant think of any other situation where we give life-altering treatments and dont have enough understanding about whats happening to those young people in adulthood, said Hillary Cass, the pediatrician who produced the report. This statement, and concerns raised in the report about lack of evidence, are misleading for two reasons.

First of all, most medications used in pediatrics lack long-term and pediatric-specific data, and so medicines for gender-affirming care are not exceptional in that regard. In fact, up to 38% of drugs used in pediatrics and 90% of those used for newborns are prescribed off-label and have had few studies performed on children. These off-label medications include antipsychotics, endocrine medications, and even some antibiotics.

Second, there is safety data on puberty blockers. They have been given to children for decades to treat conditions such as precocious puberty, in some cases for the indication of social distress related to early puberty. These drugs have been shown to be safe in prospective observational studies.

In looking for evidence Cass placed the greatest value on randomized controlled trials. In these studies, participants are randomly assigned to receive either an experimental treatment or a control treatment and then their outcomes are compared. RCTs are great when they are feasible and ethical. But they are not feasible for studying puberty blockers because the participants and researchers would know which group the participants were in when they either did or did not show pubertal changes. This knowledge could interfere with an unbiased scientific comparison of the outcomes.

Without RCTs on puberty blockers, Cass had to review other studies whose evidence she considered weak. But this does not mean a lack of benefit. Rather, it should prompt shared decision-making with clinicians, patients, and families discussing the proportionality of benefits and burdens.

Weighing the proportionality of benefit to burden from an intervention is a foundational calculus in ethical decision-making. It goes on every day in pediatrics without apparent controversy. Some arguments appeal to patient autonomythe rights and interests of the patient who wants a treatmentrather than to the treatments ability to reduce morbidity and mortality, as was discussed in an article in the current issue of the Hastings Center Report. Other arguments focus on what is in the best interest of the patient. But for many decisions in adolescent health, it is not a matter of choosing either/or but rather considering both the patients autonomy and best interest that is necessary. For example, life-and-death decisions involving serious illness in adolescents require respecting the adolescents autonomy and considering the medical teams and the parents assessments of the benefits and burdens, or beneficence and nonmaleficence, of those decisions.

Interestingly, in contrast to gender-affirming care, there seems to be relatively little public controversy over cosmetic surgery for teenagers. And yet in 2022 there were 23,527 cosmetic surgeries performed on teenagers in the U.S., including breast augmentation for both biologic cis males and females. These surgeries require the same decision-making process as other interventions for teenagers. But as far as we can tell, they receive less public scrutiny than gender-affirming care. There are no court cases against these surgeries or attempts by state governments to ban them despite legitimate questions about their benefits and burdens to adolescents and the fact that, unlike most gender-affirming interventions in youth, cosmetic surgeries are not reversible.

Issues around evidence in pediatrics are abundant, but gender-affirming care receives a disproportionate amount of public criticism. Resources are lacking for research that would provide more evidence on the safety and effectiveness of care in pediatrics, including gender-affirming care. The Cass report recognizes this problem and provides important guidance. The report does not support bans and criminalization of gender-affirming care, which has been the response by more than 20 U.S. states and is under review by the Supreme Court. On the contrary it calls for investment in and expansion of gender-affirming care: improved access, workforce education, and collaborative and coordinated services, along with infrastructure to ensure improved data collection and ongoing quality improvement to strengthen the evidence for various treatment options. While we disagree with the Cass reports assessment of the evidence for puberty blockers and hormone treatments, its overall recommendations should be heeded by critics of gender-affirming care if the goal of their critiques is truly to provide improved and beneficial care for young people.

Ian D. Wolfe, PhD, MA, RN, HEC-C, is director of ethics at Childrens Minnesota and affiliate faculty in the University of Minnesotas Center for Bioethics.

Justin M Penny, DO, MA, HEC-C, is an assistant professor in the Department of Family Medicine and Community Health at the University of Minnesota and a clinical ethics assistant professor in the Center for Bioethics.

Read this article:

Finding the Signal in the Noise on Pediatric Gender-Affirming Care - The Hastings Center

Pediatrics

Texas abortion law was followed by a rise in infant deaths: study | STAT – STAT

June 27, 2024 medical

Since Texas ban on abortion went into effect, infant deaths in the state increased by nearly 13%, according to a new analysis published on Monday in JAMA Pediatrics. In the rest of the country, infant mortality increased less than 2% over the same period.

We had read the literature that was showing an association [of infant death increases] with prior abortion restrictions or states that are hostile to abortion, said lead author Alison Gemmill, a demographer and perinatal epidemiologist at Johns Hopkins Bloomberg School of Public Health. But they werent sure how strong the connection was.

In order to establish the bans potential impact on infant mortality, the researchers looked at deaths that occurred starting in March 2022. Babies born in that month were about 10 to 14 weeks along when the Texas abortion ban known as SB 8 went into effect on Sept. 1, 2021. The ban, one of the most restrictive in the country, prohibits abortions after about six weeks of pregnancy.

The researchers found that in 2022, 2,240 infants under the age of 1 died in Texas, more than half of whom died before 28 days of life. In 2021, there were 1,985 infant deaths, a statistically significant difference.

I actually dont think that it was obvious that there would be increases in infant deaths, and so just that there is itself an important finding, said Amanda Jean Stevenson, a professor of sociology at the University of Colorado Boulder, whose work focuses on the impact of abortion and family planning policy. There would be an argument to be made that we wouldnt expect to see statistically significant increases, because this is such a rare outcome, and abortion had already been restricted in Texas pretty substantially, said Stevenson, who was not involved in the study.

The findings, she said, show the huge impact that a restriction on abortion can have, even starting from low levels of access. Before SB 8 went into effect, abortion in Texas was essentially banned after 22 weeks, and the state imposed other restrictions, such as requiring hospital admitting privileges to provide an abortion and curtailing access for minors. We think its actually a causal effect, said Gemmill.

The study had limitations, including the fact that the gestational age was not included in infants death certificates. The low absolute number of deaths prevented more detailed demographic analyses, too. But the researchers focused on building apples-to-apples comparisons by accessing the same Centers for Disease Control and Prevention data for Texas and the rest of the country. They only included states where infant deaths exceeded 10 in any given month between 2018 and 2022, as data for smaller states didnt provide the same level of granularity.

Given the really substantial rigor that this article uses in its analysis, I am confident that this is something that happened exactly when SB 8 went into effect, said Stevenson. I think that its very strong evidence that SB 8 is the cause of the observed increase.

Among the causes of infant deaths, one increased the most: congenital abnormalities, which increased 22.9% in Texas in children between 2021 and 2022, while they decreased 2.9% in the rest of the country. That trend suggests that at least in some cases, parents were forced to carry a pregnancy to term while knowing their children had little to no chance of survival, said Gemmill.

What we know from the literature is that any infant death is a traumatic event to experience, she said. But I can imagine that carrying that fetus to term when you could have had the option to terminate is going to just add that additional trauma and heartbreak to the situation.

Significant increases were also found in babies who died because of maternal complications of pregnancy; in Texas, those deaths increased by 18.2% between 2021 and 2022, compared to 7.8% in the rest of the country. Infant deaths caused by unintentional injuries, which can be associated with unwanted pregnancies, also increased by 20.7%, compared to a 1.1% increase elsewhere in the U.S.

These numbers only paint a partial picture of the long-term impact of abortion bans, said Gemmill, who is planning to focus her research on infant morbidity. Babies born with congenital abnormalities can face extremely difficult life circumstances, and require immense practical and emotional investment from parents.

Deadly fetal abnormalities cant be corrected through medical intervention, leaving the prevention of these deaths to policy. The most effective way to prevent these unnecessary infant deaths is clearly to not restrict abortion, said Stevenson. The other thing that is possible is to support people leaving Texas and states that ban abortion to get abortion in other places. So there also is an opportunity for policy intervention in the form of facilitating people crossing state lines for care, she said.

In the short term, Gemmill said, stronger support is needed for the families facing the loss of an infant. Stevenson agrees: The grief that parents experience, the burden that caring for terminally ill infants places on families and health care providers there are a lot of ways that our society doesnt support people who are dealing with traumas like these.

Original post:

Texas abortion law was followed by a rise in infant deaths: study | STAT - STAT