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BACKGROUND: Limited prospective outcome data exist regarding transgender and nonbinary youth receiving gender-affirming hormones (GAH; testosterone or estradiol). METHODS: We characterized the longitudinal course of psychosocial functioning during the 2 years after GAH initiation in a prospective cohort of transgender and nonbinary youth in the United States. Participants were enrolled in a four-site prospective, observational study of physical and psychosocial outcomes. Participants completed the Transgender Congruence Scale, the Beck Depression Inventory-II, the Revised Children's Manifest Anxiety Scale (Second Edition), and the Positive Affect and Life Satisfaction measures from the NIH (National Institutes of Health) Toolbox Emotion Battery at baseline and at 6, 12, 18, and 24 months after GAH initiation. We used latent growth curve modeling to examine individual trajectories of appearance congruence, depression, anxiety, positive affect, and life satisfaction over a period of 2 years. We also examined how initial levels of and rates of change in appearance congruence correlated with those of each psychosocial outcome. RESULTS: A total of 315 transgender and nonbinary participants 12 to 20 years of age (mean [±SD], 16±1.9) were enrolled in the study. A total of 190 participants (60.3%) were transmasculine (i.e., persons designated female at birth who identify along the masculine spectrum), 185 (58.7%) were non-Latinx or non-Latine White, and 25 (7.9%) had received previous pubertal suppression treatment. During the study period, appearance congruence, positive affect, and life satisfaction increased, and depression and anxiety symptoms decreased. Increases in appearance congruence were associated with concurrent increases in positive affect and life satisfaction and decreases in depression and anxiety symptoms. The most common adverse event was suicidal ideation (in 11 participants [3.5%]); death by suicide occurred in 2 participants. CONCLUSIONS: In this 2-year study involving transgender and nonbinary youth, GAH improved appearance congruence and psychosocial functioning. (Funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development.).
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Identidade de Gênero , Hormônios Esteroides Gonadais , Funcionamento Psicossocial , Pessoas Transgênero , Adolescente , Criança , Feminino , Humanos , Estudos Prospectivos , Testosterona/uso terapêutico , Pessoas Transgênero/psicologia , Estradiol , Hormônios Esteroides Gonadais/uso terapêutico , Adulto Jovem , MasculinoRESUMO
OBJECTIVE: Differences of sex development (DSD) can affect the physical health, appearance, and psychosocial functioning of affected individuals, but little is known about how subjective appearance perceptions (body image) impact psychosocial outcomes. This study evaluated body image and its associations with psychosocial outcomes including quality of life, resilience, and psychosocial adjustment. METHODS: This cross-sectional, multi-method study assessed body image and psychosocial outcomes including quality of life, adjustment, and resilience in 97 youth and young adults with DSD (mean age = 17 ± 3.7 years; 56% assigned female in infancy) using psychometrically sound instruments. A subsample (n = 40) completed qualitative interviews. RESULTS: Quantitative results indicated that overall, participants were satisfied with their physical appearance, although less so with their primary sex characteristics. Body image dissatisfaction was associated with poorer psychosocial adjustment, quality of life, and resilience. Qualitatively, youth and young adults reported a variety of perceptions, both positive and negative, related to their body image and the impact of living with a DSD condition. Themes identified included appearance management; effects of DSD on body image; diagnostic factors and features; attitudes about diagnosis; and treatment. CONCLUSIONS: Body image is significantly associated with psychosocial outcomes in youth and young adults with DSD, with qualitative findings highlighting both positive and negative body image experiences. Results have implications for clinical care including screening for appearance concerns, normalization of appearance variations, and intervention development to better support healthy body image and psychosocial functioning in youth and young adults with DSD.
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Imagem Corporal , Transtornos do Desenvolvimento Sexual , Qualidade de Vida , Humanos , Feminino , Masculino , Imagem Corporal/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto Jovem , Estudos Transversais , Transtornos do Desenvolvimento Sexual/psicologia , Adulto , Resiliência Psicológica , Funcionamento PsicossocialRESUMO
Clinical practice guidelines for individuals with Turner syndrome (TS) recommend screening for neuropsychological concerns (NC) and mental health concerns (MHC). However, current provider screening and referral patterns for NC and MHC are not well characterized. Additionally, prevalence of and risk factors for NC and MHC vary across studies. This multicenter chart review study examined the prevalence, risk factors for, and management of NC and MHC in a cohort of 631 patients with TS from three pediatric academic medical centers. NC and/or MHC were documented for 48.2% of patients. Neuropsychological evaluation recommendations were documented for 33.9% of patients; 65.4% of the sample subsequently completed these evaluations. Mental health care recommendations were documented in 35.0% of records; subsequent documentation indicated that 69.7% of these patients received such services. Most notably, rates of documented MHC, NC, and related referrals differed significantly by site, suggesting the need for standardized screening and referral practices. TS diagnosis in early childhood was associated with an increased risk of NC. Spontaneous menarche was associated with increased risk of MHC. Younger age at growth hormone initiation was associated with both increased risk of isolated NC and co-occurring NC and MHC. Mosaic karyotype was associated with decreased risk of NC and MHC.
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Síndrome de Turner , Feminino , Criança , Pré-Escolar , Humanos , Adolescente , Síndrome de Turner/diagnóstico , Saúde Mental , Menarca , Cariótipo , CariotipagemRESUMO
OBJECTIVE: Sexual and gender minority (SGM) stigmatization is a key factor related to transgender adolescent mental health. While previous research has focused on direct associations between stigmatization and mental health, the present study of transgender youth, equitably recruited across the autism spectrum, examines cognitive and developmental factors in relation to the self-report of experienced and perceived SGM stigmatization. METHOD: 65 binary transgender adolescents (43% transfeminine; ages 13-21 years) were intentionally recruited across the spectrum of autism traits from no traits to full criteria autism. Participants completed measures of autism-related social differences, cognitive abilities, and self-reported directly experienced and perceived SGM stigma. Autism-related social differences, cognitive abilities, and age were studied in relation to both SGM stigma factors. RESULTS: Autism-related social differences were negatively associated with level of directly experienced SGM stigma but unassociated with perceived stigma. Greater cognitive ability was positively associated with level of perceived SGM stigma, but unassociated with report of directly experienced stigma. Older age was positively associated with level of perceived SGM stigma. There was a statistical trend toward older age positively associated with level of directly experienced stigma. CONCLUSIONS: The present study identifies candidate cognitive and developmental influences on self-reported SGM stigmatization among transgender adolescents, evenly recruited across the autism spectrum. The factors which may impact the perception and experience of stigmatization have been notably under-explored in the mental health field. The examination of these individual characteristics may allow for more precise predictive models for research with transgender youth, and ultimately, in clinical care.
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OBJECTIVE: To assess health-related quality of life (HRQoL), psychosocial adjustment, and family functioning of children with differences of sex development (DSD) or cleft lip and/or palate (CL/P). METHODS: In this cross-sectional study, parents of children with DSD (n = 67), CL/P (n = 121), and a comparison group of unaffected youth (n = 126) completed standardized measures assessing family functioning and their children's HRQoL and psychosocial adjustment. Medical charts were abstracted for youth with either congenital condition. RESULTS: Children with DSD were rated as having significantly lower HRQoL and greater internalizing problems compared to youth with CL/P and unaffected youth. Children in the DSD group were also significantly more likely to fall into the clinical risk categories for total and internalizing problems relative to the CL/P and unaffected groups. Caregivers of children with DSD were significantly more likely to endorse items about child suicidality compared with caregivers in the CL/P and unaffected groups. No significant differences were found between groups for externalizing problems or the expressiveness domain of family functioning; parents of children with DSD reported significantly less family conflict relative to the other groups and greater cohesion relative to the unaffected group. Conclusions Youth with DSD appear to be at greater risk for psychosocial problems relative to children with CL/P and unaffected peers. Results underscore the need for integrated interdisciplinary care and ongoing psychosocial risk monitoring in youth with DSD.
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Fenda Labial , Fissura Palatina , Adolescente , Criança , Estudos Transversais , Humanos , Funcionamento Psicossocial , Qualidade de Vida , Desenvolvimento SexualRESUMO
Turner syndrome (TS) is a genetic condition characterized by partial or complete monosomy X. Alterations in hormonal function, height, and peer relationships, among other features and correlates of TS, appear to be risks for depressive illness. In order to summarize what is known about depression in Turner syndrome, with the aim of determining whether individuals with TS are at increased risk for depression, a literature search and analysis were conducted. In total, 69 studies were identified and 35 met criteria of being peer-reviewed English language articles that collected original data on the experience of depression in individuals with TS. Most studies used patient or parent questionnaires to evaluate depressive symptoms. These studies, a majority of which examined adults and half that examined adolescents, found that individuals with TS experienced more frequent and severe depressive symptoms than individuals without TS diagnoses. Articles studying children with TS did not demonstrate a difference in their depressive experience compared to individuals without TS. Three articles used clinician-administered scales, such as the Structured Clinical Interview for DSM-IV; all diagnosed depression in those with TS at higher rates than others. Five studies relied on expert opinion to evaluate depression. The remaining eight articles were case reports or case series that relied on expert opinion. From these data, we conclude that adolescents and adults with TS are at risk for depression and adulthood appears to be the period of the highest risk. Studies in the last 12 years show consistently more severe depressive symptoms in individuals with TS than in previous years. Implications, risk factors, and recommendations for future research are discussed.
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Depressão/etiologia , Síndrome de Turner/complicações , Síndrome de Turner/psicologia , Feminino , HumanosRESUMO
PURPOSE OF REVIEW: The review focuses on genitoplasty, performed on young children with disorders/differences of sex development (DSD) to 'typify' ambiguous external genitalia and intended to result in either male or female-appearing genitals. Consensus on whether or not early genitoplasty is optimal or appropriate has yet to be achieved. This article reviews arguments in favor of early surgery as well as those disputing their justification. RECENT FINDINGS: Arguments supporting early genitoplasty include the assumption that a child's genital anatomy should match their gender of rearing for optimal psychosocial development and that outcomes are better physically and psychologically than when surgery is deferred. Those disputing their justification argue that they deny patients the right to participate in irreversible decisions related to anatomy and gender, revoke the possibility of an open future, and violate basic human rights. Clinical management includes recommendations for interdisciplinary care integrating psychologists, and shared decision-making processes to assist families in carefully considering options. SUMMARY: Early genital surgery in DSD care is controversial with compelling arguments put forth by both proponents and opponents. Relevant issues can be examined from ethical, psychological, cultural and medical perspectives - all of which need to be accounted for in both research and standard of care development.
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Transtornos do Desenvolvimento Sexual/cirurgia , Desenvolvimento Sexual , Procedimentos Cirúrgicos Urogenitais/métodos , Criança , Pré-Escolar , Tomada de Decisões , Transtornos do Desenvolvimento Sexual/psicologia , Feminino , Identidade de Gênero , Humanos , MasculinoRESUMO
Parents of children with disorders of sex development (DSD) report significant psychological distress, including posttraumatic stress symptoms (PTSS), with mothers consistently reporting higher rates of psychological distress than fathers. However, psychological factors contributing to PTSS in both parents are not well understood. The present study sought to fill this gap in knowledge by examining PTSS and illness uncertainty, a known predictor of psychological distress, in parents of children recently diagnosed with DSD. Participants were 52 mothers (Mage = 32.55 years, SD = 5.08) and 41 fathers (Mage = 35.53 years, SD = 6.78) of 53 infants (Mage = 9.09 months, SD = 6.19) with DSD and associated atypical genital development. Participants were recruited as part of a larger, multisite study assessing parents' psychosocial response to their child's diagnosis of DSD. Parents completed measures of illness uncertainty and PTSS. Mothers reported significantly greater levels of PTSS, but not illness uncertainty, than fathers, and were more likely than fathers to report clinical levels of PTSS (21.2% compared to 7.3%). Hierarchical regression revealed that parent sex, undiagnosed or unclassified DSD status, and illness uncertainty were each associated with PTSS. The overall model accounted for 23.5% of the variance associated with PTSS. Interventions targeting illness uncertainty may be beneficial for parents of children with newly diagnosed DSD.
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Transtornos do Desenvolvimento Sexual/psicologia , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Incerteza , Adulto , Feminino , Humanos , Lactente , Masculino , Relações Pais-FilhoRESUMO
Objective: The purpose of this study was to assess clinical practice patterns with regard to diagnosis and management of testicular regression syndrome (TRS), a condition in 46,XY males with male phenotypic genitalia and bilateral absence of testes. Methods: A retrospective review was conducted at two large pediatric academic centers to examine diagnostic and management approaches for TRS. Results: Records of 57 patients were reviewed. Diagnostic methods varied widely between patients and included hormonal testing, karyotype, imaging, and surgical exploration, with multiple diagnostic methods frequently used in each patient. Of the 30 subjects that had reached adolescence at the time of the study, 17 (57%) had gaps in care of more than 5 years during childhood. Thirty subjects had received testosterone replacement therapy at a mean age of 12.1 ± 1.0 years. Forty-seven percent had a documented discussion of infertility. Eighty-two percent discussed prosthesis placement, with 35% having prostheses placed. Twenty-three percent were seen by a psychosocial provider. The between-site differences were age at fertility discussion, age at and number of prostheses placed, and type/age of testosterone initiation. Conclusion: Our findings highlight the wide variation in diagnostic approaches, follow-up frequency, testosterone initiation, fertility counseling, and psychosocial support for patients with TRS. Developing evidence-based guidelines for the evaluation and management of TRS would help reduce inconsistencies in care and unnecessary testing. Ongoing follow-up and coordination of care, even during the years when no hormonal treatment is being administered, could lead to opportunities for psychosocial support and improved interdisciplinary approach to care. Abbreviations: AMH = antimüllerian hormone; CAH = congenital adrenal hyperplasia; DSD = differences/disorders of sex development; hCG = human chorionic gonadotropin; TRS = testicular regression syndrome.
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Hiperplasia Suprarrenal Congênita , Disgenesia Gonadal 46 XY , Testículo/anormalidades , Adolescente , Criança , Humanos , Masculino , Estudos RetrospectivosRESUMO
PURPOSE: To examine provider perceptions of practice behaviors and barriers related to fertility counseling, fertility preservation, and family building among transgender patients. METHODS: Participants were medical and mental health professionals who treat adult and youth transgender patients. Recruitment occurred online and in person, via professional listservs for transgender professionals, conferences, and gender clinics. From August-November 2017, 110 participants representing nine countries responded to four open-ended questions included on a survey related to provider practice behaviors and perceived barriers to fertility counseling, fertility preservation, and family building with transgender patients. Thematic coding analysis was used to identify themes. RESULTS: Multiple themes were identified including the following: access and cost issues; urgency for gender-affirming treatment; patient maturity and inability to make future-oriented decisions; and provider-related challenges pertaining to knowledge, role, and general lack of information in the nascent field of transgender reproductive health. CONCLUSION(S): This study yielded insights into practice behaviors, challenges, and perceived barriers to fertility counseling with transgender individuals and can serve as a basis for intervention development to optimize clinical practices with this population.
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Preservação da Fertilidade/psicologia , Fertilidade/fisiologia , Pessoal de Saúde/psicologia , Pessoas Transgênero/psicologia , Adolescente , Adulto , Aconselhamento , Tomada de Decisões , Família/psicologia , Feminino , Humanos , Masculino , Reprodução/fisiologia , Inquéritos e QuestionáriosRESUMO
Objective: To provide suggestions for clinical care of youth with disorders of sex development (DSD) and their families, by drawing on preexisting pediatric psychology literature with a particular focus on child sexual abuse (CSA) genital exams. Method: Relevant peer-reviewed papers published since 1990 in the CSA literature were systematically reviewed, as well as an illustrative sample of general pediatric psychology papers. Results: Empirical research from the CSA literature provided information on prevalence of distress and the impact of provider behavior, the importance of preparation, and proposed interventions. Expert recommendations from CSA literature and general findings gleaned from pediatric psychology also address these issues. Conclusions: Psychological findings in the CSA pediatric population suggest that fears and anxieties are not universal and can be linked to a number of variables. Based on this review, we make a number of recommendations for potential interventions for youth with DSD and their families, emphasizing the need for further clinical research.
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Ansiedade/prevenção & controle , Transtornos do Desenvolvimento Sexual/diagnóstico , Transtornos do Desenvolvimento Sexual/psicologia , Exame Físico/métodos , Estresse Psicológico/prevenção & controle , Ansiedade/etiologia , Atitude do Pessoal de Saúde , Criança , Abuso Sexual na Infância/diagnóstico , Abuso Sexual na Infância/psicologia , Genitália , Humanos , Exame Físico/efeitos adversos , Exame Físico/psicologia , Relações Profissional-Paciente , Psicologia da Criança , Estresse Psicológico/etiologiaRESUMO
Historically, many gender variant individuals have lived in a chronic state of conflict between self-understanding and physical being, one in which there was a continual misalignment between others' perceptions of them and their internal self-perception of gender. Only recently have professionals from mental health and medical realms come together to provide services to these youth. This paper describes an innovative program: the first mental health and medical multidisciplinary clinic housed in a pediatric academic center in North America to serve the needs of gender variant youth. We describe our model of care, focusing on the psychologist's role within a multidisciplinary team and the mental health needs of the youth and families assisted. We highlight clinical challenges and provide practice clinical vignettes to illuminate the psychologist's critical role.
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Aconselhamento , Fertilidade/fisiologia , Pessoas Transgênero/psicologia , Adolescente , Feminino , Humanos , MasculinoAssuntos
Pessoas Transgênero , Criança , Tomada de Decisões , Ética Médica , Humanos , Pais , Maturidade SexualRESUMO
BACKGROUND: Prepubertal transgender, nonbinary, and gender-diverse (TGD) children (ie, those asserting gender identity, expressing gender-role behavior outside of culturally defined norms for their sex registered at birth, or both) are presenting in greater numbers to pediatric gender clinics across the United States and abroad. A large subset of TGD children experiences gender dysphoria, that is, distress that arises from the incongruence between gender identity and sex registered at birth. A lack of consensus exists regarding care for prepubertal TGD children due, in part, to a dearth of empirical research on longitudinal developmental trajectories of gender identity, role behavior, and gender dysphoria (when present). OBJECTIVE: The objective of this National Institutes of Health-funded study is to provide evidence to inform clinical care for prepubertal TGD children by establishing a US longitudinal cohort (N=248) of prepubertal TGD children and their caregivers that is followed prospectively at 6-month intervals across 18 months. METHODS: At each timepoint, clinical and behavioral data are collected via web-based visit from child and caregiver reporters. Latent class analysis, among other methods, is used to identify subgroups and longitudinally characterize the gender identity and gender-role behavior of TGD children. These models will define longitudinal patterns of gender identity stability and characterize the relationship between TGD classes and mental and behavioral health outcomes, including the moderating role of social gender transition (when present), on these associations. RESULTS: Baseline data collection (N=248) is complete, and the identification of TGD subgroups based on gender identity and expression using latent class analysis is anticipated in 2024. The completion of all 4 waves of data collection is anticipated in July 2024, coinciding with the start of a no-cost study extension period. We anticipate longitudinal analyses to be completed by winter 2024. CONCLUSIONS: Through a longitudinal observational design, this research involving prepubertal TGD children and their caregivers aims to provide empirical knowledge on gender development in a US sample of TGD children, their mental health symptomology and functioning over time, and how family initiated social gender transition may predict or alleviate mental health symptoms or diagnoses. The research findings have promise for clinicians and families aiming to ensure the best developmental outcome for these children as they develop into adolescents. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/55558.
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Saúde Mental , Humanos , Masculino , Criança , Feminino , Estudos Longitudinais , Estados Unidos/epidemiologia , Identidade de Gênero , Disforia de Gênero/psicologia , Disforia de Gênero/terapia , Pessoas Transgênero/psicologia , Pessoas Transgênero/estatística & dados numéricos , Pré-EscolarRESUMO
OBJECTIVES: We examined: (1) healthcare communication satisfaction and psychosocial outcomes (resilience, QoL, and psychological adjustment) in adolescents and young adults (AYA) with differences of sex development (DSD), (2) differences in psychosocial outcomes between those who were highly satisfied and those who were less satisfied, and (3) group differences between adolescents (ages 12-17) and young adults (ages 18-26) regarding associations with healthcare communication and psychosocial outcomes. METHODS: AYA with DSD across four study sites reported on satisfaction with healthcare communication and psychosocial outcomes. Analyses included descriptive statistics (aim 1), independent samples t-tests (aim 2), and Pearson's correlations (aim 3). RESULTS: Participants reported high levels of satisfaction with healthcare communication. Higher healthcare communication satisfaction was associated with greater resilience (p = .01), better QoL (p = .02), and fewer internalizing problems (p = .04). For adolescents, higher healthcare communication satisfaction was associated with better psychosocial outcomes (p values ranging from.01-.04). No significant associations were found in the young adult group. CONCLUSIONS: Satisfaction with healthcare communication is related to positive psychosocial outcomes in adolescents with DSD. PRACTICE IMPLICATIONS: These data underscore the importance of optimizing communication with families, engaging AYA in early and ongoing discussions about their care, and including psychosocial providers in DSD care.
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Comunicação , Satisfação do Paciente , Qualidade de Vida , Humanos , Adolescente , Feminino , Masculino , Adulto Jovem , Adulto , Qualidade de Vida/psicologia , Transtornos do Desenvolvimento Sexual/psicologia , Criança , Adaptação Psicológica , Inquéritos e Questionários , Resiliência PsicológicaRESUMO
Gender identity is a core component of human experience, critical to account for in broad health, development, psychosocial research, and clinical practice. Yet, the psychometric characterization of gender has been impeded due to challenges in modeling the myriad gender self-descriptors, statistical power limitations related to multigroup analyses, and equity-related concerns regarding the accessibility of complex gender terminology. Therefore, this initiative employed an iterative multi-community-driven process to develop the Gender Self-Report (GSR), a multidimensional gender characterization tool, accessible to youth and adults, nonautistic and autistic people, and gender-diverse and cisgender individuals. In Study 1, the GSR was administered to 1,654 individuals, sampled through seven diversified recruitments to be representative across age (10-77 years), gender and sexuality diversity (â¼33% each gender diverse, cisgender sexual minority, cisgender heterosexual), and autism status (> 33% autistic). A random half-split subsample was subjected to exploratory factor analytics, followed by confirmatory analytics in the full sample. Two stable factors emerged: Nonbinary Gender Diversity and Female-Male Continuum (FMC). FMC was transformed to Binary Gender Diversity based on designated sex at birth to reduce collinearity with designated sex at birth. Differential item functioning by age and autism status was employed to reduce item-response bias. Factors were internally reliable. Study 2 demonstrated the construct, convergent, and ecological validity of GSR factors. Of the 30 hypothesized validation comparisons, 26 were confirmed. The GSR provides a community-developed gender advocacy tool with 30 self-report items that avoid complex gender-related "insider" language and characterize diverse populations across continuous multidimensional binary and nonbinary gender traits. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
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Transtorno Autístico , Minorias Sexuais e de Gênero , Recém-Nascido , Humanos , Feminino , Adolescente , Adulto , Masculino , Criança , Adulto Jovem , Pessoa de Meia-Idade , Idoso , Identidade de Gênero , Autorrelato , Comportamento Sexual , SexualidadeRESUMO
BACKGROUND: Surgical intervention in youth with differences of sex development (DSD) is a controversial topic. Historically, evidence suggests that genital surgery in DSD is associated with mixed patient satisfaction. However, less is known about surgical outcomes under therapeutic advancements in the past several decades. OBJECTIVE: The purpose of the current study is to provide an updated and empirical qualitative examination of the surgical experiences and responses to care of adolescents and young adults (AYA) with DSD in order to fill this gap in the literature and inform patient care. METHODS: Qualitative interviews were conducted with 37 AYA (ages 12-26) with DSD. Interviews were transcribed, coded, and analyzed thematically. RESULTS: Three major themes were identified: 1) knowledge related to surgery; 2) surgical and medical experience; and 3) psychosocial factors related to surgery. Results demonstrated that most AYA were not involved in the decision to pursue surgery and were observed to have varying levels of knowledge regarding their surgeries. Most participants in the current study had received a DSD-related surgery and the majority described having positive surgical experiences and few regrets. Nonetheless, AYA described both medical and psychosocial challenges related to their surgeries and recoveries and offered feedback on ways to improve the surgical process. DISCUSSION: The current study provides a qualitative examination of the surgical experiences of 37 AYA with DSD. Findings highlight the importance of regular and ongoing communication with providers to improve knowledge related to surgery during the decision-making process as well as after surgical intervention. Results underscore the benefits of multidisciplinary teams and the value of patient handouts and decision aids in assisting AYA in the decision to pursue surgical intervention. Other specific recommendations for providers include increased patient privacy during genital exams, greater emphasis on psychoeducation and pain management strategies, and the use of behavioral health services to assist with challenges and social support. CONCLUSIONS: The decision to pursue surgical intervention in youth with DSD remains a complex and controversial issue, and more information regarding patients' perspectives on surgery is needed. The current study provides novel insights into patient experiences of surgical intervention and highlights the need for psychosocial support throughout the shared decision-making process.
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Desenvolvimento Sexual , Apoio Social , Adolescente , Adulto , Criança , Humanos , Pesquisa Qualitativa , Adulto JovemRESUMO
STUDY OBJECTIVE: Infants with genital development considered atypical for assigned female sex may undergo feminizing genitoplasty (clitoroplasty and/or vaginoplasty) in early life. We sought to identify factors associated with parent/caregiver decisions regarding genitoplasty for their children with genital virilization. DESIGN: Longitudinal, observational study SETTING: Twelve pediatric centers in the United States with multidisciplinary differences/disorders of sex development clinics, 2015-2020 PARTICIPANTS: Children under 2 years old with genital appearance atypical for female sex of rearing and their parents/caregivers INTERVENTIONS/OUTCOME MEASURES: Data on the child's diagnosis and anatomic characteristics before surgery were extracted from the medical record. Parents/caregivers completed questionnaires on psychosocial distress, experience of uncertainty, cosmetic appearance of their child's genitalia, and demographic characteristics. Urologists rated cosmetic appearance. For 58 patients from the study cohort with genital virilization being raised as girls or gender-neutral, we compared these data across 3 groups based on the child's subsequent surgical intervention: (i) no surgery (n = 5), (ii) vaginoplasty without clitoroplasty (V-only) (n = 15), and (iii) vaginoplasty and clitoroplasty (V+C) (n = 38). RESULTS: Fathers' and urologists' ratings of genital appearance were more favorable in the no-surgery group than in the V-only and V+C groups. Clitorophallic length was greater in the V+C group compared with the V-only group, with substantial overlap between groups. Mothers' depressive and anxious symptoms were lower in the no-surgery group compared with the V-only and V+C groups. CONCLUSIONS: Surgical decisions were associated with fathers' and urologists' ratings of genital appearance, the child's anatomic characteristics, and mothers' depressive and anxious symptoms. Further research on surgical decision-making is needed to inform counseling practices.
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Hiperplasia Suprarrenal Congênita , Procedimentos de Cirurgia Plástica , Criança , Feminino , Humanos , Lactente , Hiperplasia Suprarrenal Congênita/psicologia , Procedimentos Cirúrgicos em Ginecologia , Pais/psicologia , Desenvolvimento Sexual , Virilismo , Estudos LongitudinaisRESUMO
BACKGROUND: An increasing number of adolescents are seeking gender care at clinics and hospital programs, and requesting gender-affirming hormonal treatment. The interventions can either include suppression of testosterone and introduction of estrogen, or suppression of estrogen and introduction of testosterone. AIMS: This review article focuses on the psychosocial experiences of youth who have completed their endogenous puberty and are now requesting one of these two forms of gender-affirming hormonal treatment. We investigate the comparative profiles of these two subgroups of transgender/gender-expansive youth. MATERIALS AND METHODS: Review of research data, established standards of care and practice guidelines, and clinical observations. RESULTS: Differences and similarities are noted and discussed in several realms: gender-related experiences prior to receiving hormonal treatment; the relationship between the physical changes and psychological experiences that accompany the introduction of testosterone or suppression of testosterone with replacement with estrogen; the intrapersonal and interpersonal implications of the treatment; considerations of fertility preservation for future family building; the role of the family in the decision-making process prior to starting a course of hormone therapy; and the capacity of youth to make informed decisions about these partially irreversible medical interventions. DISCUSSION: Medical providers who offer gender-affirming hormonal care to youth should work with the family and allied professionals to assure that the youth's gender health is enhanced, barriers to care are removed, and mental health risks are reduced, whether the T is coming out or going in. CONCLUSION: The cohort of youth who come to medical providers after completing puberty, and request gender-affirming hormones in the form of increases or reductions in T have a great deal in common, and also extensive variation among them.