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Idiopathic pulmonary fibrosis (IPF), a type of interstitial lung disease and the most common type of idiopathic interstitial pneumonia, is characterized by chronic fibrosis and progressive scarring of the lung tissues.1 The disease is of clinical significance because of its misdiagnosis and high mortality rate.1 The cause of IPF remains unknown; however, alveolar epithelial injury and abnormal injury repair are thought to be the main causative agents.2 Its estimated prevalence in the US ranges from 10 to 60 cases per 100,000 people.1 As IPF progresses, patients experience increasing episodes of dyspnea, eventually leading to respiratory failure.3 The average survival rate after diagnosis is 3 to 5 years; the probability of surviving 5 years after diagnosis is estimated to be 20% to 40%.2   

Differential Diagnosis 

A workup to diagnose IPF includes laboratory blood test, chest radiographs, high resolution computed tomography (HRCT), and lung biopsy.1 The first step in diagnosing IPF is ruling out other known causes of interstitial lung disease (ILD), with the most common being chronic hypersensitivity pneumonitis, sarcoidosis, connective tissue disease–related ILD, drug-induced ILD, and pneumoconiosis (Table 1).1 They share similar clinical and radiologic findings of the usual interstitial pneumonia (UIP) pattern.4 

Making an accurate diagnosis of IPF is critical because treatments vary amongst the different types of ILD. The incorrect treatment regimen may lead to a degradation in the patient’s quality of life and shorten their lifespan.4 

Another potential differential diagnosis is COVID-19 pneumonia. Findings of COVID-19 pneumonia can present in a similar way to idiopathic interstitial pneumonias on HRCT.5 An acute exacerbation of IPF will show ground-glass opacities on HRCT, comparable with findings of COVID-19 pneumonia.5 However, if the patient is presenting with the common symptoms of COVID-19 and had a known exposure to the virus, this can aid in ruling out IPF as a differential diagnosis. Radiologists play a vital role in discerning between COVID-19 pneumonia, idiopathic interstitial pneumonias, and chronic fibrosing lung diseases.5 

History and Physical Exam Findings 

A detailed patient history is necessary to rule out other causes of ILD. A history of co-morbidities, environmental exposures, medication use, family history, connective tissue disorders, high-risk occupations (such as those in dusty environments, including farming, hairdressing, and metal work) and history of tobacco smoking should be inquired about.6 There are more than 380 medications that are known to cause lung disease, some of the medications that are noted to cause ILD are Amiodarone, Macrobid, chemotherapy, Methotrexate, Amphotericin B, sulfonamides, biological agents, anti-inflammatories. 7 There are many environmental and occupational exposure risk factors of ILD, including, but not limited to, asbestos, silica, coal, organic and metal dusts, chemicals, mold, farm animals, and birds. 8  A history of smoking tobacco is associated with a 2-fold increase in developing IPF.8 The disease is more prevalent in people older than 50 years and in men.3 In a study by Luppi et al, an estimated 60% of patients with IPF had up to 3 of the following comorbidities: pulmonary hypertension, emphysema, obstructive sleep apnea, lung cancer, venous thromboembolism, chronic obstructive pulmonary disease, coronary artery disease, anxiety, depression, sarcopenia, osteoporosis, diabetes mellitus, hypothyroidism, and gastroesophageal reflux disease.9 

Patients with IPF most commonly present with complaints of progressive dyspnea, at rest or with exertion, and a nonproductive cough.1 Positive physical examination findings for IPF include inspiratory fine crackles and clubbing.3 Crackles may be present in all lung fields, correlating with fibrotic areas.10 Cyanosis, fatigue, right-sided heart failure, and respiratory failure are associated with more advanced disease.10 Patients may also report experiencing episodes of a sudden onset of respiratory failure with new abnormalities on HRCT unexplained by other causes.1 

Workup in Primary Care Setting  

The primary care provider can initiate the workup for IPF with laboratory testing, chest radiographs, and HRCT until the patient is referred to a pulmonologist. If the patient’s symptoms, history, and physical examination are suggestive of ILD, the clinician may proceed with obtaining laboratory testing to further rule out diagnoses closely associated with the symptoms of IPF. An extensive laboratory panel to include in the workup for IPF is indicated in Table 2.11 

Genetic testing should be included in the workup of IPF in all patients who have interstitial lung disease or those with a positive family history of interstitial lung disease.11 There are sporadic and familial forms of IPF and it is estimated that 33% of these forms can be diagnosed through genetic testing for certain genetic variants.12 A list of gene mutations is included in Table 3.12 Telomere length should also be tested when evaluating for sporadic and familial forms of IPF, as one third of patients with IPF will have short telomeres.12  

A complete workup of IPF includes spirometry, serologic testing, imaging, and lung biopsy.1 Pulmonary function tests including forced vital capacity (FVC), total lung capacity and diffusion capacity of the lungs for carbon monoxide (DLCO); 6-minute walk distance should also be assessed.1 A positive finding is a reduction in FVC, total lung capacity, DLCO, and 6-minute walk distance; however, these tests are imprecise in that the results may be normal in early disease or positive in the presence of other restrictive lung diseases.1 Serologic tests commonly included in the workup of IPF aid in exclusion, rather than being specific for IPF.1 However, serum lactate dehydrogenase, though non-specific, can be used as a biomarker for the severity of acute exacerbations and activity of the disease.10 

Chest radiographs are used for evaluating disease location, changes in volume loss, and the presence of pulmonary hypertension.10 The typical findings on chest radiograph are bilateral reticulonodular opacities, more commonly in the lower lobes.6 The disease presents with a UIP pattern on HRCT, consisting of heterogeneous paraseptal fibrosis.1 Peripheral, subpleural, and lower lobar reticulation, honeycombing, and single-layered clusters of cystic airspaces suggest the presence of IPF in the absence of other causes.1,10 Another feature of lung fibrosis is the presence of traction bronchiectasis and bronchiolectasis seen on HRCT.13 Findings on HRCT can be classified as typical, probable, indeterminate, or non-IPF based on the criteria shown in Table 4.10 If the pattern seen on HRCT is atypical or unclear, surgical lung biopsy or bronchoscopic lung cryobiopsy can be performed to provide a more definitive diagnosis.10 However, lung biopsies are restricted to certain patients because of potential complications.1 A patient presenting with a clinical history highly suggestive of IPF, a history of tobacco use and older than 60 years of age, with a probable UIP pattern on HRCT, does not need a lung biopsy.4 

Treatment 

The American Thoracic Society, European, Respiratory Society, Japanese Respiratory Society, and Asociación Latinoamericana de Tórax updated the IPF guidelines on diagnosis and treatment of IPF in 2022.14 The guidelines state that the treatments of IPF should include nonpharmacological and pharmacological, as discussed below.14 It is mentioned that patients’ comorbidities, most notable being pulmonary hypertension, gastroesophageal reflux, obstructive sleep apnea, and lung cancer, should be diagnosed and treated.14 However, in the treatment of gastroesophageal reflux, the updated guidelines recommend not treat patients with IPF with antacid medications or anti reflux surgery to improve respiratory outcomes.14 

Shared decision making between the patients, family members and provider can be utilized to also offer palliative care to patients.14 The guidelines state that providers should monitor patients’ disease progression, utilizing pulmonary function tests and the six-minute walk test, every four to six months.14 HRCT scans can also be used to monitor progression, presence of lung cancer or acute exacerbations.14 Acute exacerbations should be treated with corticosteroids, and it is recommended to avoid mechanical ventilation for most patients with respiratory failure.14 

"
Making an accurate diagnosis of IPF is critical because treatments vary amongst the different types of interstitial lung disease. The incorrect treatment regimen may lead to a degradation in the patient’s quality of life and shorten their lifespan.

Nonpharmacologic and pharmacologic treatments are implemented to slow the progression of IPF, enhance quality of life, and improve symptoms and survival.1 Nonpharmacologic treatment includes supplemental oxygen, pulmonary rehabilitation, and lung transplantation.1 Supplemental oxygen therapy should be started when oxygen saturation declines to 88% or less at rest or during activity.1 Pulmonary rehabilitation enhances physical exertion capacity, thus minimizing dyspnea during activity.1 

Undergoing lung transplantation can increase survival and improve quality of life; however, transplants are limited to select candidates.1 Clinicians should educate the patient about a lung transplant if they experience a sudden reduction in pulmonary function, decline in oxygen saturation, pulmonary hypertension, or need treatment in the emergency department for an acute exacerbation, respiratory deterioration, or pneumothorax.2 

Pirfenidone and nintedanib are the 2 antifibrotic medications approved for the treatment of IPF.2,6 Pirfenidone, a modified pyridine, slows the rate of fibrosis by reducing the production of collagen and suppressing transforming growth factor-β (TGFβ).2 Nintedanib, a tyrosine kinase inhibitor, reduces fibroblast activity by suppressing signaling pathways of vascular endothelial, fibroblast and platelet-derived growth factor receptors.2 Both medications slow FVC decline by 50% per year and are used to prevent acute exacerbations.10 

Pirfenidone and nintedanib have similar efficacy and tolerability; therefore, selecting between the 2 should be individualized to patient preference, comorbidities, and current medications.15 Side effects of pirfenidone include skin rash, weight loss, nausea, fatigue, and increased liver enzymes.2 Side effects of nintedanib include diarrhea, nausea, and hepatotoxicity; patients taking either antifibrotic therapy require liver-function monitoring.2 There are no definitive guidelines in predicting disease progression; it is recommended to initiate antifibrotic therapy early in the disease despite the patient’s baseline impairments.15   

Cost-Effectiveness of Antifibrotic Therapy 

The economic burden to the patient must be considered when treating patients with IPF. In the US, the annual cost of pirfenidone averages $113,193, and $112,357 for nintedanib.16 These prices were estimated from a database including patients who have commercial private insurance and those with Medicare Advantage.16 The lifetime analysis of cost and benefits demonstrates that symptom management treatment costs $79,815 with 3.78 quality-adjusted life years (QALYs), nintedanib costs $675,544 with 4.15 QALYs, and pirfenidone costs $688,778 with 4.10 QALYs.16 Though antifibrotics are clinically efficacious, there is a lower-than-expected number of patients with IPF receiving antifibrotics, possibly because of  their high price.16 A potential solution to the high cost of antifibrotic therapy is assistance programs through the drug’s manufactuer; however, these programs are highly individualized and not all patients will meet inclusion criteria.16 

Conclusion 

The complexity of IPF makes the diagnosis challenging. More research is still needed to accurately understand the disease pathophysiology and treatment. Prevention and early detection of IPF are necessary in developing a management plan for patients since a diagnosis carries a poor prognostic outcome. A multidisciplinary approach that includes primary care providers, pulmonologists, radiologists, and pathologists is essential to accurately make the diagnosis of IPF.10  

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A 56-year-old man presents with a right middle finger injury that occurred 1 month earlier and has progressively become more deformed. The patient notes that his finger hit the sharp edge of a fan and he sustained a laceration to the dorsum of the proximal interphalangeal (PIP) joint. He originally went to a local urgent care for sutures and wound management but over the past few weeks, the finger has become deformed (Figures 1 and 2). On physical examination, the patient has a healing laceration to the dorsum of the PIP joint. The PIP joint is hyperflexed and the distal interphalangeal (DIP) joint is in hyperextension consistent with a boutonniere deformity.

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The American Academy of Dermatology (AAD) has issued updated guidelines for the clinical management of patients with acne vulgaris, which have been published in the Journal of the American Academy of Dermatology.

Systematic reviews to evaluate the effectiveness and safety of acne treatments approved by the United States Food and Drug Administration (FDA) were performed from May 2021 to November 2022. The reviews evaluated the data under the scope of 9 clinical questions. The AAD work group comprised 9 board-certified dermatologists, 3 board-certified pediatric dermatologists, 1 staff liaison, and 1 patient representative.

A variety of acne grading systems are available, with none universally accepted in clinical settings. The most frequently used grading system in the US is the Investigator Global Assessment (IGA), which is characterized by good agreement between clinician and patient ratings. Core acne outcomes measures should include signs and symptoms, satisfaction with appearance and treatment, extent of scars/dark marks, long-term acne control, adverse events, and health-related quality of life. Routine microbiologic, antibiotic susceptibility, and endocrine testing is generally not indicated in most patients with acne.

Acne management includes treatments such as topical therapies, systemic antibiotics, hormonal agents, oral isotretinoin, physical modalities, complementary and alternative medicine, and dietary and environmental interventions. The AAD guidelines encourage shared decision-making to individualize care based on the potential treatment benefits and risks, acne severity and location, costs, patient preferences, and other factors.

"
These guidelines identified important evidence gaps on the use of microbiology and endocrinology testing in acne, the use of systemic antibiotics beyond tetracycline-class antibiotics, physical modalities, complementary and alternative therapies, dietary interventions for the treatment of acne, and cost-effectiveness of acne treatments.

Topical Therapies

Topical therapies, including prescription and over-the-counter medicines, are common treatments for acne. Topical agents, excluding topical antibiotics, may be used as initial therapy and maintenance as monotherapy or combined with other topical or oral agents. Options include topical retinoids, benzoyl peroxide, antibiotics, clascoterone, salicylic acid, and azelaic acid. In a good practice statement regarding the use of topical therapies for acne, the AAD work group recommends the use of multimodal therapy combining multiple mechanisms of action to optimize efficacy and lower the risk of antibiotic resistance.

A strong recommendation was made for the use of topical retinoids for patients with acne. Among topical retinoids, tretinoin, adapalene, tazarotene, and trifarotene are approved by the FDA for acne treatment in the US, and data do not suggest superiority of 1 topical retinoid over another. The use of benzoyl peroxide and topical antibiotics is strongly recommended for acne. Topical antibiotic monotherapy is not recommended owing to the potential for antibiotic resistance.

The work group strongly recommends the use of fixed-dose topical combinations therapy with benzoyl peroxide plus topical retinoid, benzoyl peroxide plus topical antibiotic, or topical retinoid plus topical antibiotic for acne treatment. To prevent antibiotic resistance, concomitant treatment with benzoyl peroxide is recommended for patients receiving combination therapy with a topical retinoid plus topical antibiotic.

Conditional recommendations were made for clascoterone, salicylic acid, and azelaic acid.

Topical azelaic acid, benzoyl peroxide, erythromycin, and clindamycin are not likely to cause fetal harm. In addition, salicylic acid can be used during pregnancy if the exposure area and treatment duration are limited. Use of topical therapies other than topical retinoids is preferred in pregnant women, and topical minocycline is not recommended during pregnancy or lactation. Data on the use of topical benzoyl peroxide, retinoids, antibiotics, and their combinations during pregnancy are insufficient.

Systemic Antibiotics

In patients with moderate to severe acne, systemic antibiotics are frequently used, including oral tetracycline-class antibiotics such as doxycycline, minocycline, and sarecycline. Tetracycline-class antibiotics are contraindicated during pregnancy, lactation, and in children aged younger than 9 years during tooth development.

In a pair of good practice statements, the AAD work group recommends limiting the use of systemic antibiotics, when possible, to reduce the risk for antibiotic resistance and other antibiotic-associated complications. Systemic antibiotics should be used concomitantly with benzoyl peroxide and other topical therapies. Oral antibiotics should not be used as monotherapy for acne, and systemic antibiotic use should be limited to the shortest duration possible, typically no longer than 3 to 4 months.

Doxycycline use is strongly recommended for the treatment of acne, and taking the drug with food and adequate fluids in an upright position may lower the risk for gastrointestinal side effects. A conditional recommendation was made for the use of doxycycline rather than azithromycin for acne owing to an increased risk for antibiotic resistance with increasing use of azithromycin. Conditional recommendations were made for minocycline and sarecycline. Although sarecycline is generally well tolerated, with a low incidence of side effects and a high certainty of benefits vs risks, the AAD work group gave it a conditional recommendation owing to concerns about its high cost.

These antibiotics are also indicated for community-acquired infections, including pneumonia and urinary tract infections; broad use for acne is not recommended. The AAD work group did not make recommendations comparing certain systemic antibiotics directly against each other or against topical treatments as the evidence was insufficient.

Hormonal Agents

The FDA has approved 4 combined oral contraceptives (COCs) for the treatment of acne in women who desire oral contraception: norgestimate/ethinyl estradiol (EE), norethindrone acetate/EE/ferrous fumarate, drospirenone/EE, and drospirenone/EE/ levomefolate. COCs are conditionally recommended for the treatment of acne. Clinicians may consider combining COCs with other acne therapies early in treatment to promote a faster treatment response. Potential adverse effects of COCs include venous thromboembolism, myocardial infarction, stroke, breast cancer, and cervical cancer, among others.

A conditional recommendation was provided for the use of spironolactone for acne. Common side effects include diuresis, breast tenderness, breast enlargement, gynecomastia, fatigue, headache, and dizziness. Spironolactone should not be used during pregnancy. The utility of potassium monitoring was determined to be low in patients without risk factors for hyperkalemia (eg, older age, medical comorbidities, medications). The AAD work group issued a good practice statement regarding intralesional corticosteroid injection as an adjuvant treatment in patients who have larger acne papules or nodules. Intralesional corticosteroid injections should be used judiciously in patients with a risk for acne scarring and/or for rapid improvement in inflammation and pain.

The AAD work group did not provide a recommendation on the use of oral corticosteroids, flutamide, or metformin for acne treatment as evidence was insufficient. Long-term adverse effects of oral corticosteroids prohibit their use as a primary treatment for acne.

Isotretinoin

Since 1982, oral isotretinoin has been the only FDA-approved treatment for patients with severe recalcitrant nodular acne vulgaris; however, clinical trial data regarding its efficacy in routine dermatology practice are limited and of low quality. A good practice statement was provided for the use of isotretinoin in patients with severe acne or those for whom standard treatment with oral or topical therapy has failed. Patients with acne and a related psychosocial burden and/or scarring may be candidates for isotretinoin.

Isotretinoin is commonly used in patients who have mild to moderate acne that is refractory to other topical and oral therapies or who relapse quickly after discontinuation of oral antibiotics. Laboratory monitoring during isotretinoin use should include liver function tests, a fasting lipid panel, and a pregnancy test in patients with pregnancy potential. Complete blood count monitoring is not necessary.

Among patients with pregnancy potential, pregnancy prevention is mandatory with isotretinoin treatment, owing to the risk of fetal congenital malformations; all patients who receive isotretinoin must enroll in and adhere to iPLEDGE, the current FDA-mandated Risk Evaluation and Mitigation Strategy aimed at preventing isotretinoin exposure during pregnancy. The AAD work group also advises clinicians to monitor patients for depression, anxiety, suicidal ideation/suicidality, and other neuropsychiatric adverse effects. Treatment decisions should be personalized based on individual responses to this drug.

Conditional recommendations were made for the use of daily dosing vs intermittent dosing of isotretinoin and for treatment with either standard isotretinoin or lidose-isotretinoin.

The AAD work group did not directly compare traditional dosage vs low-dosage isotretinoin regimens, isotretinoin with systemic antibiotics with or without topical therapies, or isotretinoin alone vs isotretinoin administered in combination with topical agents as evidence was insufficient.

Physical Modalities

After review, the AAD work group found that the evidence was insufficient to make a recommendation for the use of acne lesion/comedo extraction, chemical peels, laser and light-based devices, microneedle radiofrequency devices, or photodynamic therapy with aminolevulinic acid for patients with acne. A conditional recommendation was provided against the addition of pneumatic broadband light therapy to treatment with adapalene 0.3% gel.

Complementary/Alternative Therapies

Complementary and alternative therapies include botanical or plant-derived agents and vitamins. The AAD work group did not provide a recommendation regarding the use of topical tea tree oil, topical green tea, topical witch hazel, oral pantothenic acid, oral or topical zinc, and oral or topical niacinamide in patients with acne as evidence was insufficient.

Diet

There were conflicting research findings regarding low-glycemic-load diet as a treatment for acne. The evidence was insufficient to recommend the use of a low dairy diet, low whey diet, omega-3 fatty acids, or chocolate for acne treatment.

AAD Review Limitations and Conclusions

Limitations in the development of the current AAD guidelines include analysis based on the best available evidence at the time of the systematic review, as well as the work group's review of English-language studies — which may have excluded relevant data published in other languages — and randomized controlled trials only — which may have limited identification of long-term follow-up data.

The AAD work group members concluded, "These guidelines identified important evidence gaps on the use of microbiology and endocrinology testing in acne, the use of systemic antibiotics beyond tetracycline-class antibiotics, physical modalities, complementary and alternative therapies, dietary interventions for the treatment of acne, and cost-effectiveness of acne treatments." They added, "[Randomized controlled trials] with long-term follow-up and comparative effectiveness research are necessary to examine and compare patient-centered acne treatment outcomes."

Disclosure: Some of the study authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors' disclosures.

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Content warning: This article discusses suicide.

For transgender youth in the United States, limited access to gender-affirming care is an ongoing issue stemming from multiple barriers, including lack of family support, a shortage of competent providers, and a surge in legislation banning or restricting gender-affirming care.

Barriers to Gender-Affirming Care

“Many transgender minors are fearful of coming out to their parents or have come out and their parents are not supportive of them,” explained Gloria A. Bachmann, MD, MMS, professor in the Department of Obstetrics, Gynecology, and Reproductive Sciences and medical director of the PROUD Gender Center of New Jersey at the Rutgers Robert Wood Johnson Medical School in New Brunswick. “In this scenario, these individuals are unable to get the gender-affirming medical care that would benefit them because they do not have parental support for their health care.”

Even for transgender minors who have supportive guardians, a range of other obstacles may prevent access to needed care. “Gender-diverse youth face continued stigma and discrimination, even in the healthcare system, and as a result they may not access care for fear of not being accepted and affirmed of who they are,” said Samantha V. Hill, MD, MPH, assistant professor of the Department of Pediatrics at Emory University School of Medicine in Atlanta, Georgia.  

Furthermore, “There is a major shortage of both mental health and medical providers who are trained in providing gender-affirming care, which means families may wait for up to a year to receive care, if they are able to access it at all,” according to Jack L. Turban, MD, MHS, assistant professor in the Division of Child and Adolescent Psychiatry and director of the Gender Psychiatry Program at the University of California, San Francisco.

In recent years, a proliferation of passed and proposed legislative bills have added to the stigma, discrimination, and narrow access to care that gender-diverse individuals — and youth in particular — often experience.1,2

“There has been a dramatic increase in legislation geared at reducing or eliminating gender-affirming medical and surgical interventions in minors, and many states have passed these legislative bills into law,” Dr Hill stated.

As a result, some states have no providers who can offer gender-affirming treatment, Dr Turban said. Such legislation has prevailed despite opposition from all major medical organizations, including the American Medical Association, the American Academy of Pediatrics, and the American Psychiatry Association.2 “In some instances, states have even proposed legislation to limit or ban care for adults,” he noted.3 

In a study published in March 2023 in the Journal of Adolescent Health, Dr Hill and colleagues examined the number of anti-trans bills proposed each year in the US from 2010 to 2019 using data from several sources.4 They found that 189 anti-transgender bills were proposed and 13 were passed during the 10-year period.

“These bills focused on a variety of topics including healthcare, youth athletics, bathroom facilities, identity documents and nondiscrimination, and really emphasize that transgender youth and their subsequent health have become a major focus in this country,” Dr Hill explained.

In 2023, 503 anti-trans bills were proposed and 85 were passed, according to the Trans Legislation Tracker.4 Many of these carried over into 2024, and hundreds of new anti-trans bills have already been proposed as of February 2024.

“That is a dramatic increase, even if we look at 2021 and 2022, when only 125 and 148 bills were proposed, respectively,” Dr Hill said.

Negative Impact of Anti-Trans Legislation

In their study, Dr Hill and her team “found that this change in the legislative climate not only impacted self-reported feelings of being victimized and bullied by gender-diverse youth, but it also impacted non-gender-diverse youth,” she noted.4

In their statement to Endocrinology Advisor, the Endocrine Society said that such legislation is based on widespread misinformation and stated, “We recognize the risks of blocking adolescents from accessing gender-affirming care: It raises the risk of suicidal ideation and self-harm and denies patients the benefits of treatment, including improved psychological functioning.”6

As an example, the Endocrine Society pointed to a 2020 study by Dr Turban et al, which showed lower odds of lifetime suicidal ideation among transgender adults who received puberty-delaying medication during adolescence compared with those who did not receive such treatment, even after adjustment for demographic variables and family support (adjusted odds ratio, 0.3; 95% CI, 0.2-0.6). Approximately 9 out of 10 participants who wanted but did not receive pubertal suppression reported lifetime suicidal ideation.7

https://infogram.com/endo_feature_315-1h0n25o8n7q8l4p?live

Among other recent research in this area, a prospective cohort study of 104 transgender and nonbinary youths found that receipt of gender-affirming care (in this case, puberty blockers and gender-affirming hormones) was linked to 60% lower odds of depression and 73% lower odds of suicidality during the subsequent 12 months.6 A large, survey-based study published in 2022 in the Journal of Adolescent Health reported similar results.8

The Endocrine Society added that banning care for adolescents creates the need for additional gender-affirming procedures in adulthood.

“Blocking pubertal hormones early in puberty prevents a teenager from developing irreversible secondary sex characteristics, such as facial hair and breast growth,” it explained. “Transgender and gender-diverse individuals who did not have access to care as teenagers may need additional treatment to address hair growth, voice changes, and facial development.”

The Endocrine Society also cited research showing that state restrictions on gender-affirming care have increased median drive times to medical appointments for youth seeking such care, with the largest absolute increases observed in Florida (8.5 hours), Texas (6.7 hours), and Utah (5.0 hours).  According to the study authors, increased travel times and associated costs may further impede treatment access and negatively affect mental health among transgender youths.1  

"
Transgender and gender-diverse teenagers, their parents, and physicians should be able to determine the appropriate course of treatment, and banning evidence-based medical care based on misinformation takes away the ability of parents and patients to make informed decisions.

“Bans and restrictions on gender-affirming care contradict mainstream medical practice and scientific evidence, and these policies are taking medical decision-making out of the hands of transgender and gender-diverse teenagers, their families, and their physicians,” the Endocrine Society told Endocrinology Advisor. “Cisgender teenagers, together with their parents or guardians, are currently deemed competent to give consent to various medical treatments, and transgender teenagers should be afforded the same legal rights.”9,10

Dr Bachman emphasized that gender-affirming care for minors is provided by a healthcare team that thoroughly evaluates each patient, and many studies have shown high rates of patient satisfaction with such care: “The largest of these studies was the 2022 US Trans Survey that included 92,329 respondents, in which 98% who were given hormones for their gender identity or transition were either a lot more satisfied or a little more satisfied.”11

Increasing Competency in Gender-Affirming Care

The experts interviewed for this article recommend various strategies for increasing clinical competency in gender-affirming care and advocating for gender-diverse individuals at large.

“There are 2 major sets of guidelines for providing gender-affirming medical care — the Endocrine Society Guidelines and the World Professional Association for Transgender Health Standards of Care — that physicians should use to inform their practice,” Dr Turban said.12,13 

The Endocrine Society guideline, which cites more than 260 research studies, states that adolescents are eligible for hormone therapy when they are mentally competent to fully understand and consent to this partially irreversible treatment, which is typically around the age of 16 years.12 

The Endocrine Society has also published a position statement on transgender health and the importance of access to gender-affirming care, as well as a toolkit for clinicians who want to advocate for transgender health care in their home states.14,15 In addition, providers can check the Kaiser Family Foundation’s policy tracker to follow emerging developments in restrictive legislation regarding gender-affirming care.16

“Sadly, the media landscape in this area has been saturated with non-experts and political propaganda that is not evidence-based, so it’s essential that the voices of physicians be heard both in the media and in legislative debates,” Dr Turban stated. “I encourage physicians to write evidence-based op-eds in their local or state papers when legislation arises and to reach out to their local representatives to educate them on the science relevant to bills that would impact the care of transgender patients.”17

In terms of treatment, “For those clinicians who do not have the clinical background to provide gender-affirming care, referral to medical establishments that do, such as the PROUD Gender Center of New Jersey, is extremely important,” Dr Bachman advised.

Dr Hill said more work is needed to educate all health care workers about gender-affirming care and how to link gender-diverse youth to these services. “There is a lack of a road map for gender-diverse youth and those who support them, and many families are unaware of how to access care from providers knowledgeable in gender-affirming care.”

She provided the following recommendations for clinicians interested in providing gender-affirming care in their practices:

  • A great place to start is with creating a welcoming environment for gender-diverse youth in clinical settings, as recommended by many professional organizations including the American Academy of Pediatrics.18 This includes documenting asserted names and pronouns in the electronic medical record, use of gender-neutral language, and educating staff in affirming all patients.
  • It is important for clinicians to educate themselves about appropriate ways to affirm someone's gender and to understand gender expression and gender identity. There are many resources for clinicians to access, such as those provided by Fenway Health. They can also follow the vast literature on the subject that is evidence-based.
  • In general, clinicians can advocate for gender-diverse youth by correcting people who have misconceptions about these individuals or who misgender them by using the wrong pronouns.
  • Clinicians can be agents of change wherever they are providing care and introducing the topic if gender-affirming policies are not already in place.
  • Clinicians can sign up to receive updates as legislation is proposed within local, state, and national jurisdictions so they can be informed about how the law changes and help disseminate accurate information to their colleagues and the communities they serve.
  • Engaging in advocacy days at the state or national capitol and sharing scientifically accurate information about gender-diverse youth and their families are other great ways to advocate.
  • For more ideas, clinicians can visit the National Institute for Children’s Health Quality website.19 

“Transgender and gender-diverse teenagers, their parents, and physicians should be able to determine the appropriate course of treatment, and banning evidence-based medical care based on misinformation takes away the ability of parents and patients to make informed decisions,” according to the Endocrine Society. “Medical evidence, not politics, should inform treatment decisions.”

Further Reading

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