Enhanced management of infectious diseases, improvement in health-related quality of life, nutrition, and hygiene, along with increased life expectancy, are driving an epidemiological transition among adolescents. This transition is marked by the increase of pediatric chronic diseases as significant health issues among youths.1,2 Numerous physical, emotional, and behavioral changes occur during adolescence, and an additional long-term illness can delay growth, puberty, sexuality and the maturation of other biological systems.
A notable increase in knowledge regarding many chronic conditions across various pediatric specialties has been reported in recent years. These advancements in children and adolescents’ chronic conditions have been particularly observed in Adolescent Medicine, Allergy and Immunology, Cardiology, Endocrinology, Gastroenterology, Genetics, Hematology, Transplantation Care, Hepatology, Infectious Diseases, Nephrology, Neurology, Nutrition, Oncology, Orthopedics, Palliative and Pain Care, Pediatric Surgery, Pulmonology, Premature Infant Care, Psychiatry, Rheumatology, and other fields.1,2 However, when a health-threatening condition, such as a chronic illness, overlaps with the challenges faced by an LGBTQIA+ (Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Asexual, and others) adolescent at this stage of life, it significantly amplifies the risk and vulnerability to psychological distress. This overlap also raises important questions about both mental and physical health, as well as health-related quality of life. Therefore, it is important to recognize that LGBTQIA+ adolescents dealing with chronic illnesses may experience higher levels of psychological distress due to stigma and discrimination. Consequently, they may face additional barriers in the context of healthcare and treatment.
Studies of LGBTQIA+ adolescents and youths have shown that they may experience a higher prevalence of HIV and other sexually transmitted infections, bullying, physical abuse, anxiety, and depression.3 A systematic review and meta-analysis study revealed that among adolescent sexual minority males who had engaged in sexual activity within the past 6-months or were sexually active, 44 % reported engaging in anal intercourse without condom use, 50 % did not use a condom during their last sexual encounter, and 32 % reported using alcohol or drugs at their last sexual experience.4 When addressing the risk of HIV infection among adolescents and young people, especially LGBTQIA+ individuals, combined prevention strategies, particularly the availability of Pre-Exposure Prophylaxis (PrEP), have proven to be effective preventive measures. However, PrEP was more commonly accessed by adolescents and young men who have sex with men.5 Another study focusing on adolescent and young gay and bisexual men identified substantial barriers to accessing and adhering to PrEP, particularly influenced by social factors such as race and socioeconomic status. Using an intersectional approach, the study highlighted the significance of considering the subjective and relational experiences of young people in the development of HIV prevention strategies. It emphasized the necessity for a more inclusive approach informed by PrEP users themselves to enhance the effectiveness of HIV prevention programs and overall healthcare delivery.6
Sexual and gender minorities also reported more frequent polysubstance use than non-minorities.7 Furthermore, transgender and gender-diverse individuals should have prompt access to healthcare services. Treatments for gender transition such as gonadotropin-releasing hormone agonists and gender-affirming hormones may impact growth, as well as bone, cardiovascular, and reproductive health.8 These points are also crucial to discuss and individualize the approach to address these issues for each LGBTQIA+ adolescent with a chronic condition.
Another significant finding is that only a small number of physicians providing LGBTQIA+ care to adolescents felt sufficiently equipped to address the needs of their sexual-minority patients due to a lack of education and resources.9 Moreover, some LGBTQIA+ adolescents with chronic conditions may refrain from attending multiprofessional and multidisciplinary appointments due to concerns about facing discrimination and anticipated stigma. These findings may significantly impact adolescent adherence to medications and rehabilitation programs, potentially resulting in disease flares, damage, and complications of pediatric chronic conditions.
Pediatricians should have offices that are teen-friendly and welcoming to all adolescents, regardless of sexual orientation and behavior.10 Adolescent Health and Medicine Society supports that all healthcare providers who care for adolescents should be trained to provide competent and nonjudgmental care for LGBTQIA+ youth.11 Indeed, the Adolescent Unit of our university and tertiary hospital has been providing care for LGBTQIA+ adolescents and their families with both healthy and chronic conditions over the past several years, focusing on a person-centered care approach. However, further qualitative and quantitative studies involving LGBTQIA+ teens with chronic conditions will be essential to fully understand and address their specific needs.
It is essential to standardize the systematization and dynamics of first and further medical appointments for LGBTQIA+ adolescents with chronic illnesses, and the authors suggest three or two steps. As outlined in Table 1, the first medical appointment for adolescents and family members with chronic illnesses should follow a structured approach consisting of three or two steps. Within our group, the authors recommend that the initial medical appointment be structured into three distinct steps. During the first step, healthcare providers should explain the dynamics of care, emphasizing aspects of privacy, confidentiality, accessibility, collaborative approach, and non-discrimination language and policies, and a care oriented to the adolescent´s ability to make informed decisions as they grow older. The second stage of the first appointment involves a session only with the adolescent's family members, aiming to gather the family and youth's medical history. This stage allows an opportunity for parents and caregivers to express their fears and concerns to the general or pediatric specialty physician, while also creating a supportive environment for them to discuss their own experiences. Finally, the third step is dedicated solely to the adolescents, providing them with a safe space to express themselves freely and discuss any further worries or questions they may have. This includes topics such as sexual and emotional development, as well as issues related to their chronic condition. Further appointments for teens with an adolescent medicine specialist or another pediatric specialty physician will be divided into two steps (Table 1). The physical examination and laboratory assessment of LGBTQIA+ adolescents with chronic illnesses are performed in the same manner as for any adolescent. Importantly, this also includes attention to signs and symptoms specific to each adolescent's chronic condition, ensuring comprehensive and tailored healthcare delivery.
Recommendations for physician appointment of LGBTQIA+ (Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Asexual, and Others) adolescent with chronic conditions.
Clinicians should remember that distinct racial/ethnic, religious, and demographic groups may have stressors for LGBTQIA+ adolescents with chronic illnesses. The experience of “coming out' for LGBTQIA+ teens may also be discussed during the appointment. It may be a constructive experience for some adolescents, fostering acceptance and a sense of liberation. However, for others, it can be harmful, resulting in stigma, humiliation, peer rejection, discrimination, and ostracism, which can consequently lead to significant emotional issues.11 Suicide and hospital admissions for suicide-related thoughts and behaviors are relevant issues for LGBTQIA+ adolescents, particularly for those with chronic conditions. Schools may also offer a unique opportunity to support suicide prevention with the promotion of positive social relationships and fostering a safe and inclusive community environment.12
In conclusion, it is vital to prioritize awareness and comprehension of the distinctive and specific requirements of LGBTQIA+ teens with chronic conditions. Nonjudgmental multiprofessional and multidisciplinary clinics, characterized by effective communication skills and devoid of biases, along with emotional care, support groups, and community resources, are mandatory for delivering high-quality care to this population.
This study was supported by grants from Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP) (#2015/03756-4 to CAS), Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq 304984/2020-5 to CAS), and by Núcleo de Apoio à Pesquisa “Saúde da Criança e do Adolescente” da USP (NAP-CriAd) to CAS.