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Background: Access to gender-affirming medical care has life-saving effects on transgender and gender diverse (TGD) individuals. An increasing number of TGD individuals seek care which led to waiting times of years. We assessed the duration and effects of excessive waiting for gender-affirming care. Methods: In this mixed-methods cross-sectional population study, conducted in the Netherlands between June and August 2019, all TGD individuals with experiences with receiving/applying for gender-affirming medical care could participate. Data of participants waiting for care was primarily analyzed. Demographic characteristics and requested care (multiple-choice questions) and the effects of waiting on health were surveyed (open-ended questions). Descriptive statistics were calculated per treatment, and differences in participant characteristics between those waiting for and already in care were assessed through Chi squared tests and post-hoc testing of residuals. Open text answers were thematically analyzed. Findings: Of all 975 participants, 431 (44.2%) waited for gender-affirming medical care. For 10 out of 20 treatment modalities, the median waiting period was more than a year. Participants already in care were on average higher educated and less-frequently non-binary. Subjective effects of waiting were (very) negative for most treatments. Qualitative findings showed that long waiting was associated with a range of psychosocial distress, poorer health, increasing healthcare consumption, and increased inequality between TGD individuals. Interpretation: Findings confirm that TGD individuals encounter long waiting times in multiple stages of their gender-affirming medical care. Waiting affects both physical and psychosocial health. Individual resilience and resources can mitigate these experiences, which increase inequality within this already marginalized group. Funding: Ministry of Health, Welfare and Sport of the Netherlands and Zorgverzekeraars Nederland (Healthcare Insurers Netherlands).
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Background: The ongoing quest to surgically create the (nearly) ideal neophallus in transgender men has led to the continuous development of transgender medicine and the proposed introduction of penis transplantation. However, both technical and ethical issues arise when developing this treatment. Aim: We sought to extract ethical considerations among different stakeholder groups regarding penile transplantation surgery in transgender men and to define preliminary clinical recommendations. Methods: Three semistructured focus groups, consisting of different stakeholders, were organized to participate in discussions of ethical considerations retrieved from the ethics literature of transplantation and transgender medicine. Analysis of the results was performed according to empirical ethics. Outcomes: Study outcomes were the identification of qualitative themes describing ethical considerations pertaining to penile transplantation in transgender men. Results: Nineteen people participated in this qualitative study. The main domains that emerged included arguments in favor of and arguments against penile transplantation. Although the participants expressed positive attitudes toward developing this care, with acknowledgement of the current limitations stakeholders of all groups were reluctant to endorse the introduction of penile transplantation for transgender men at this point. Clinical Implications: Under the present circumstances, all groups expressed both a wide variety of ethical considerations as well as a tendency to prefer developing alternative treatment options or improving the results of currently available treatments in relation to penile transplantation for transgender men. Strengths and Limitations: This study was the first (empirical) study to focus on this topic and included a diversity of stakeholder perspectives. Limitations included the hypothetical nature of the discussion as well as the clinical setting in which the topic has been studied. Conclusion: Introducing penile transplantation for transgender men, under the current circumstances, comes with a wide range of ethical considerations, which deal with personal identity, autonomy, medical risks, risk for transgender support and donor willingness, and issues regarding equality. Despite the present hesitancy to use penile transplantation, should the technical side of this treatment option develop, further research in the ethical field of penile transplantation for transgender men is recommended.
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Background: Klinefelter syndrome (KS) is associated with an increased risk of lower socioeconomic status and a higher risk for morbidity and mortality, which may have a significant impact on quality of life (QOL). The objective of this study is to investigate QOL in a large European cohort of men with KS. Design: Cross-sectional multicentre study. Methods: Two-hundred-eighteen men with KS were recruited from 14 clinical study centres in 6 European countries which participated in the European dsd-LIFE study. Male normative data from a healthy and a psychiatric reference population were used for comparison. The validated World Health Organization (WHO) QOL (WHOQOL)-BREF questionnaire was used to investigate five main domains of quality of life (WHOQOL): global, physical, psychological, environment, and social. Results: The QOL physical domain score was lower for men with KS compared to the healthy reference population (KS: 66.9; s.d. 19.4, n = 193; healthy reference population: 76.5; s.d. 16.2, n = 1324, P < 0.001) but higher compared to the psychiatric reference population (54.6; s.d. 20.6; n = 77, P < 0.001). The WHOQOL-psychological domain score was lower for men with KS compared to the healthy reference population (KS: 63.6; s.d. 17.8, n = 193; healthy reference population: 67.8; s.d. 15.6, n = 1324, P < 0.05) but higher compared to the psychiatric reference population (45.9; s.d. 26.0), n = 77, P < 0.001). The social domain score on the WHOQOL questionnaire was found to be lower in men with Klinefelter syndrome (KS) compared to the healthy reference population (KS: 60.0; s.d. 21.6, n = 193; healthy reference population: 68.2; s.d. 13.8, n = 1324, P < 0.001). However, this score was similar to that of the psychiatric reference population (61.0; s.d. 17.0, n = 77, P = 0.5). The WHO environment domain score of men with KS (70.0; s.d. 15.0, n = 193) was similar to the healthy reference population (70.5; s.d. 20.7, n = 1324) but higher compared to the psychiatric reference population (61.9; s.d. 20.8, n = 77, P = 0.002). Experienced discrimination, less social activities, and the presence of chronic health problems were associated with significantly decreased QOL in men with KS. Conclusion: Overall QOL in European men with KS is significantly worse compared to a healthy European reference population. Especially, the presence of discrimination, less social activities, and chronic health problems is associated with lower physical, psychological, and social QOL. Further studies are necessary to investigate if a multidisciplinary approach may help to provide adequate counselling and psychosocial support to improve QOL.
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When seeking gender-affirming care, trans* and gender-diverse individuals often describe experiencing barriers. However, a deeper understanding of what constitutes such barriers is generally lacking. The present research sought to better understand the barriers trans* and gender-diverse individuals experienced, and their effects, when seeking gender-affirming care in the Netherlands. Qualitative interviews were conducted with trans* and gender-diverse individuals who sought care at a Dutch multidisciplinary medical center. Twenty-one participants were included, of which 12 identified as (trans) male, six identified as (trans) female, one as trans*, and one as gender-nonconforming (GNC)/non-binary. The interviews were mostly conducted at the homes of the participants and lasted between 55 min and 156 min (mean = 85 min). Following data collection and transcription, the interviews were analyzed using axial coding and thematic analysis. A total of 1361 codes were extracted, which could be classified into four themes describing barriers: lack of continuity: organizational and institutional factors (ncodes = 546), patient-staff dynamics (ncodes = 480), inadequate information and support (ncodes = 210), and lack of autonomy in decision making (ncodes = 125). Within our study, trans* and gender-diverse individuals described encountering multiple and diverse barriers when seeking gender-affirming care in the Netherlands. Future studies are needed to evaluate whether individualized care, the decentralization of care, and the use of decision aids can improve the experienced barriers of trans* and gender-diverse individuals seeking gender-affirming care within the Dutch healthcare system.
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Personas Transgénero , Transexualidad , Humanos , Masculino , Femenino , Identidad de Género , Atención a la Salud , Recolección de DatosRESUMEN
Background: While the importance of sexual pleasure for physical and mental health becomes increasingly evident, research on sexual pleasure in transgender persons is lacking. Recently, the first version of the Amsterdam Sexual Pleasure Index (ASPI Vol. 0.1) was validated in cisgender persons. This questionnaire aims to assess the tendency to experience sexual pleasure independent of gender, sexual orientation or anatomy. Aim: The aims of this study were threefold. First, to perform exploratory scale validation analyses of the ASPI in transgender persons. Secondly, to compare transgender sexual pleasure scores to reference data in cisgender persons. Finally, to identify factors that are associated with sexual pleasure. Methods: In a follow-up study conducted within the European Network for the Investigation of Gender Incongruence (ENIGI), online questionnaires were distributed to persons who had a first clinical contact at gender clinics in Amsterdam, Ghent or Hamburg four to six years earlier. Internal consistency of the ASPI was assessed by calculating McDonald's omega (ωt). ASPI scores were compared to scores from the cisgender population using a one sample t-test, and linear regressions were conducted to study associations with clinical characteristics, psychological wellbeing, body satisfaction and self-reported happiness. Results: In total, 325 persons filled out the ASPI. The ASPI showed excellent internal consistency (ωt, all: 0.97; transfeminine: 0.97, transmasculine: 0.97). Compared to data from cisgender persons, transgender participants had significantly lower total ASPI scores (i.e., lower sexual pleasure; transgender vs. cisgender, mean(SD): 4.13(0.94) vs. 4.71(0.61)). Lower age, current happiness and genital body satisfaction were associated with a higher tendency to experience sexual pleasure. Conclusion & discussion: The ASPI can be used to assess the tendency to experience sexual pleasure and associated factors in transgender persons. Future studies are needed to understand interplaying biopsychosocial factors that promote sexual pleasure and hence transgender sexual health and wellbeing.
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Transmasculine transgender and gender-diverse individuals may request gender-affirming surgery, standalone or in addition to other interventions. The choices and preferred outcomes of surgery can be highly individual. Besides surgeons' technical skills and patient physique, professionals in this field should be able to cooperate with other disciplines and with patients. The most requested surgery is masculinizing chest surgery, aiming to create a masculine chest with minimal scarring. For genital surgery, metoidioplasty refers to the procedure where the hypertrophic clitoris is released and possibly a scrotum is created from local labia flaps, whereas phalloplasty refers to a procedure in which a neophallus is created from a flap. Possible other surgeries include hysterectomy/oophorectomy, colpectomy, and the implants of scrotal or erection prostheses. In order to guide patients and clinicians, standardized outcome measures as well as evidence-based decision aids have been developed. Such aids, in combination with collaborative medical and psychosocial care, may further leverage the long-term outcomes of these surgeries.
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Cirugía de Reasignación de Sexo , Personas Transgénero , Transexualidad , Masculino , Femenino , Humanos , Cirugía de Reasignación de Sexo/métodos , Transexualidad/cirugía , Colgajos Quirúrgicos/cirugía , HisterectomíaRESUMEN
Objectives: To evaluate the experienced barriers of care for treatment-seeking trans individuals (TSTG) in three large European clinics. Methods: An online follow-up questionnaire was filled out by 307 TSTG individuals as part of the research protocol of the European Network for the Investigation of Gender Incongruence (ENIGI). Data was collected during follow-up in 2017/2018, around 5 years after participants had their initial clinical appointments in Ghent (Belgium), Amsterdam (the Netherlands), or Hamburg (Germany). Background characteristics, country, treatment characteristics and mental health were analyzed in relation to experienced barriers of care (EBOC, measured though agreement with statements). Results: The majority of participants reported various EBOC, oftentimes more than one. The most-frequently reported EBOCs pertained to the lack of family and friends' support (28.7%, n = 88) and travel time and costs (27.7%, n = 85), whereas around one-fifth felt hindered by treatment protocols. Also, a significant share expressed the feeling that they had to convince their provider they needed care and/or express their wish in such way to increase their likelihood of receiving care. A higher number of EBOCs reported was associated with more mental health problems, lower income and female gender. Conclusions: A substantial number of TSTG individuals within three European health care systems experiences EBOCs. EBOCs relate to both personal and systemic characteristics. These findings can help health care providers and centers to improve care. More research must be done to better understand the diversity among TSTG individuals and the corresponding barriers experienced. Supplemental data for this article is available online at https://doi.org/10.1080/26895269.2021.1964409.
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BACKGROUND: Openness on one's health condition or (stigmatized) identity generally improves mental health. Intersex or differences of sex development (DSD) conditions have long been kept concealed and high levels of (internalizing) mental health problems are reported. This study examines the effects of condition openness on anxiety and depression and the role of mediating concepts in this population. METHODS: Cross-sectional data of individuals of 16 years and older with an intersex/DSD condition was collected in 14 specialized European clinics as part of the dsd-LIFE study. Patient-reported measures were taken on openness and shame (Coping with DSD), self-esteem (Rosenberg Self-Esteem Scale), satisfaction with care (CSQ4), anxiety and depression (HADS). Scores were compared per clinical group and data were analyzed via structural equation modeling (SEM) to calculate prediction and mediation models. RESULTS: Data of 903 individuals were included in this study (Turner syndrome (n = 284), 46, XY DSD (n = 233), CAH (n = 206) and Klinefelter syndrome (n = 180)). Participants were moderately open on their condition. High levels of both anxiety and depression were observed across the sample. In SEM analysis, the tested models predicted 25% of openness, 31% of anxiety and 48% of depression. More condition openness directly predicted lower anxiety and depression symptoms, as well as indirectly through increased self-esteem, self-satisfaction and satisfaction with social support. CONCLUSIONS: Condition openness is associated with lower anxiety and depression in individuals with an intersex/DSD condition. Healthcare may provide the necessary knowledge and skills to employ one's optimal level of self-disclosure in order to improve mental health.
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Trastornos del Desarrollo Sexual , Salud Mental , Humanos , Estudios Transversales , Análisis de Clases Latentes , Trastornos del Desarrollo Sexual/epidemiología , Trastornos del Desarrollo Sexual/psicología , Desarrollo SexualRESUMEN
PURPOSE: Adolescence is an important period for sexual development, including sexual debut. The purpose of this study was to assess first romantic and sexual experiences and debut age in individuals with differences of sex development (DSD/intersex) and compare these with age-matched and gender-matched population control values. METHODS: Questionnaire data on sociodemographic characteristics, romantic and sexual milestones (e.g., masturbation, dating), satisfaction with sexual life and sexual activity at follow-up, self-esteem, and feelings of femininity or masculinity were collected from 976 participants in Europe with a DSD condition. Participants were divided into six diagnostic subgroups based on their diagnostic classification: women with Turner syndrome, congenital adrenal hyperplasia, 46XY-DSD nonvirilized, and 46XY-DSD female partially virilized conditions and men with 46XY-DSD male or Klinefelter syndrome. Age-specific and gender-specific reference values were retrieved from a Dutch population sample. RESULTS: Individuals with DSD were less likely to reach each of the romantic and sexual milestones compared to their peers without these conditions and they were significantly older when reaching these milestones. Between clinical subgroups, individuals with Klinefelter were significantly older when reaching milestones and in the female groups and individuals with Turner were the least likely to reach milestones. Furthermore, a higher age when reaching several romantic and sexual milestones was correlated with lower self-esteem, lower satisfaction with sexual life, and lower sexual frequency at follow-up. DISCUSSION: Due to a difference in biopsychosocial context, individuals with DSD often experience a different and/or delayed sexual development during adolescence. Healthcare providers should be aware of these differences in adolescents with DSD and their sexual development to optimize affirmative counseling.
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Trastornos del Desarrollo Sexual , Desarrollo Sexual , Femenino , Adolescente , Masculino , Humanos , Trastornos del Desarrollo Sexual/epidemiología , Trastornos del Desarrollo Sexual/psicología , Conducta Sexual/psicología , Autoimagen , Encuestas y CuestionariosRESUMEN
Klinefelter syndrome (KS) is associated with an increased risk of neuropsychological morbidity, such as learning disabilities, which may have a significant impact on socioeconomic status (SES). The objective of this study was to investigate the SES in men with KS and to associate this outcome with social participation, age at diagnosis, testosterone therapy and physical and mental health status. Men with KS were recruited in 14 clinical study centers in six European countries which participated in the European dsd-LIFE study. Two hundred five men with KS were eligible for inclusion. Male normative data from the European Social Surveys (ESS) were used for comparison. Data related to education, occupation, satisfaction with income and householding were collected. Compared to the ESS reference population, fewer men with KS achieved a high level of education (13% vs 25%, P < 0.001). There was a significant difference in having a paid job (55% vs 66%, P < 0.001), and the percentage of absence by sickness or disability was higher among men with KS (10% vs 3%, P < 0.001). Furthermore, satisfaction with current household's income was lower (32% vs 42%, P < 0.01). Lower scores for subjective general health were associated with lower scores for these outcomes. Men with KS achieve on average lower levels of education, occupation and report less satisfaction with income compared to the ESS reference population. The presence of health problems and lower scores of subjective general health was related to lower levels of occupation and lower satisfaction with income in men with KS.
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Health disparities faced by transgender people are partly explained by barriers to trans-inclusive healthcare, which in turn are linked to a lack of transgender health education in medical school curricula. We carried out a theory-driven systematic review with the aim to (1) provide an overview of key characteristics of training initiatives and pedagogical features, and (2) analyze barriers and facilitators to implementing this training in medical education. We used queer theory to contextualize our findings. We searched the PubMed/Ovid MEDLINE database (October 2009 to December 2021) for original studies that reported on transgender content within medical schools and residency programs (N = 46). We performed a thematic analysis to identify training characteristics, pedagogical features, barriers and facilitators. Most training consisted of single-session interventions, with varying modes of delivery. Most interventions were facilitated by instructors with a range of professional experience and half covered general LGBT+-content. Thematic analysis highlighted barriers including lack of educational materials, lack of faculty expertise, time/costs constraints, and challenges in recruiting and compensating transgender guest speakers. Facilitators included scaffolding learning throughout the curriculum, drawing on expertise of transgender people and engaging learners in skills-based training. Sustainable implementation of transgender-health objectives in medical education faces persistent institutional barriers. These barriers are rooted in normative biases inherent to biomedical knowledge production, and an understanding of categories of sex and gender as uncomplicated. Medical schools should facilitate trans-inclusive educational strategies to combat transgender-health inequities, which should include a critical stance toward binary conceptualizations of sex and gender throughout the curriculum.
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Educación Médica , Internado y Residencia , Personas Transgénero , Curriculum , Femenino , Humanos , Masculino , Facultades de MedicinaRESUMEN
OBJECTIVES: To report the long-term follow-up outcomes of masculinizing surgery in disorders/differences of sex development (DSD), including both physicians' and patients' perspectives on appearance and functional outcome, including sexuality. PATIENTS AND METHODS: In total, 1040 adolescents (age ≥16 years) and adults with a DSD took part in this multicentre cross-sectional clinical study in six European countries in 2014/2015. Of those, 150 living in other than the female gender had some kind of masculinizing surgery: hypospadias repair, orchidopexy, breast reduction and/or gonadectomy. The study protocol included medical data collection, an optional genital examination, and patient-reported outcomes including satisfaction with appearance and current sexual functioning. RESULTS: Diagnoses included partial and mixed gonadal dysgenesis (45,XO/46,XY; n = 38), Klinefelter syndrome/46,XX males (n = 57), and various 46,XY DSDs (n = 42; e.g. partial androgen insensitivity syndrome, severe hypospadias) and 13 with other diagnoses. Of the participants, 84 underwent hypospadias surgery, 86 orchidopexy, 52 gonadectomy and 32 breast reduction (combinations possible). Physicians evaluated anatomical appearance at genital examination as poor in approximately 11% of patients. After hypospadias surgery, 38% of participants reported that they were (very) dissatisfied with anatomical appearance and 20% with function. The physician and patient evaluations were moderately correlated (r = 0.43). CONCLUSION: The majority of participants were neutral to satisfied with the appearance and function in the long-term after masculinizing surgery. Given the initial severe phenotype and a risk of unsatisfactory results after masculinizing surgery in DSD, treatment should be handled by experienced multidisciplinary teams in order to optimize the postoperative results.
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Trastornos del Desarrollo Sexual , Hipospadias , Adolescente , Estudios Transversales , Trastornos del Desarrollo Sexual/genética , Trastornos del Desarrollo Sexual/cirugía , Femenino , Humanos , Hipospadias/cirugía , Masculino , Medición de Resultados Informados por el Paciente , Desarrollo SexualRESUMEN
BACKGROUND: Gender-affirming treatments are reported to improve mental health significantly. However, a substantial number of transgender individuals report a relapse in, or persistence of, mental health problems following gender-affirming treatments. This is due to multiple stressors occurring during this period, and in general as a consequence of widespread stigma and minority stress. AIM: The aim of this pilot study was to identify different coping strategies that transgender individuals use in response to stressors prior to and following gender-affirming treatments, as mediator of mental health. METHODS: Qualitative interviews were conducted to better understand the treatment outcomes and healthcare experiences of Dutch transgender individuals who had received gender-affirming treatments. Nineteen participants were included, of which 12 identified as (transgender) male, six as (transgender) female and one as transgender. OUTCOMES: Inductive coding and theory-informed thematic analysis were used to assess stressors (ncodes = 335) and coping strategies (ncodes = 869). RESULTS: Four stressor domains were identified, including lack of support system, stressors related to transition, and physical and psychosocial stressors post-transition. We identified six adaptive coping strategies of which acceptance, help seeking and adaptive cognitions concerning gender and transition were reported most frequently. Of the seven maladaptive strategies that we identified, social isolation and maladaptive cognitions concerning gender and transition were the most-reported maladaptive coping strategies Clinical implications: The results indicated that transgender individuals may experience significant stress, both transgender-specific and non-specific, prior to and following gender-affirming treatments and, as a result, use many coping strategies to adapt. Increased awareness of stressors and (mal)adaptive coping strategies may help to improve mental healthcare and overall support for transgender individuals. Strengths and Limitations: This is the first (pilot) study to provide insight into the range of stressors that transgender individuals experience during and after gender-affirming treatments, as well as the variety of coping strategies that are used to adapt. However, since this was a pilot study assumptions and generalizations of the evidence should be made cautiously. CONCLUSION: Results of this pilot study showed that transgender individuals may undergo significant stress during and after gender-affirming medical treatment related to the treatments and the social experiences that occur during this period, and as a result, use a range of coping strategies to adapt to the stress.
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BACKGROUND: While much emphasis has been put on the evaluation of gender-affirming surgery (GAS) approaches and their effectiveness, little is known about the health care needs after completion of these interventions. AIM: To assess post-GAS aftercare needs using a mixed-method approach and relate these to participant characteristics. METHODS: As part of the ENIGI follow-up study, data was collected 5 years after first contact for gender-affirming treatments in 3 large European clinics. For the current analyses, only participants that had received GAS were included. Data on sociodemographic and clinical characteristics was collected. Standard aftercare protocols were followed. The study focused on participants' aftercare experiences. Participants rated whether they (had) experienced (predefined) aftercare needs and further elaborated in 2 open-ended questions. Frequencies of aftercare needs were analyzed and associated with participant characteristics via binary logistic regression. Answers to the open-ended questions were categorized through thematic analysis. OUTCOMES: Aftercare needs transgender individuals (had) experienced after receiving GAS and the relation to sociodemographic and clinical characteristics. RESULTS: Of the 543 individuals that were invited for the ENIGI follow-up study, a total of 260 individuals were included (122 (trans) masculine, 119 (trans) feminine, 16 other, 3 missing). The most frequently mentioned aftercare need was (additional) assistance in surgical recovery (47%), followed by consultations with a mental health professional (36%) and physiotherapy for the pelvic floor (20%). The need for assistance in surgical recovery was associated with more psychological symptoms (OR=1.65), having undergone genital surgery (OR=2.55) and lower surgical satisfaction (OR=0.61). The need for consultation with a mental health professional was associated with more psychological symptoms and lower surgical satisfaction. The need for pelvic floor therapy was associated with more psychological symptoms as well as with having undergone genital surgery. Thematic analysis revealed 4 domains regarding aftercare optimization: provision of care, additional mental health care, improvement of organization of care and surgical technical care. CLINICAL IMPLICATIONS: Deeper understanding of post-GAS aftercare needs and associated individual characteristics informs health care providers which gaps are experienced and therefore should be addressed in aftercare. STRENGTHS & LIMITATIONS: We provided first evidence on aftercare needs of transgender individuals after receiving GAS and associated these with participant characteristics in a large multicenter clinical cohort. No standardized data on aftercare received was collected, therefore the expressed aftercare needs cannot be compared with received aftercare. CONCLUSION: These results underline a widely experienced desire for aftercare and specify the personalized needs it should entail. IJ de Brouwer, E Elaut, I Becker-Hebly et al. Aftercare Needs Following Gender-Affirming Surgeries: Findings From the ENIGI Multicenter European Follow-Up Study. J Sex Med 2021;18:1921-1932.
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Cirugía de Reasignación de Sexo , Personas Transgénero , Transexualidad , Cuidados Posteriores , Estudios de Seguimiento , HumanosRESUMEN
INTRODUCTION: Tactile and erogenous sensitivity of the neophallus after phalloplasty is assumed to affect the sexual well-being of transmasculine persons and, ultimately, their quality of life. The experienced and objective sensation of the neophallus and their association are largely unknown. AIM: This study evaluated experienced tactile and erotic sensation of the neophallus in transmasculine persons and investigated how this was related to objective tactile sensitivity. METHODS: Between August 2017 and January 2020, 59 transmasculine persons who underwent phalloplasty were recruited to participate in a prospective follow-up study. Tactile sensitivity of the neophallus and donor-site was measured (Semmes-Weinstein Monofilament test) and compared, and participants were asked to fill out a questionnaire about experienced sensation of the neophallus and sexual wellbeing. MAIN OUTCOME MEASURES: Experienced and objective sensation of the neophallus were measured by using a questionnaire and Semmes-Weinstein Monofilament scores. RESULTS: Neophallic tactile sensitivity was significantly reduced compared to the donor-site (n = 44), with the proximal part being more sensitive than the distal part (median follow-up of 1.8 years, range 1.0-7.2)). Sensitivity of the neophallus was not significantly associated with the surgical flap used, yet increased significantly with follow-up time. The questionnaire was completed by 26 participants of which 24 (92.3%) experienced (some degree of) tactile sensitivity in their neophallus. Erogenous sensation was experienced by 23 (88.5%). Experienced and objectified tactile sensitivity were not significantly correlated (Spearmans's rho = 0.23, P = .26). Answers to open-ended questions showed that results often do not match expectations. CONCLUSION: Tactile sensation of the neophallus was reduced in most transmasculine persons and improved slowly over time. A significant association between subjective and objective measures could not be detected. Although experienced sensitivity varied between individuals, the vast majority reported to have tactile and erotic sensitivity in the neophallus.Transmasculine persons should be informed that sensitivity of the neophallus will likely be reduced. Elfering L, van de Grift TC, Al-Tamimi M, et al. How Sensitive Is the Neophallus? Postphalloplasty Experienced and Objective Sensitivity in Transmasculine Persons. Sex Med 2021;9:100413.
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BACKGROUND: In our institution, genital Gender-Affirming Surgery (gGAS;phalloplasty or metoidioplasty) in transgender men is offered with or without Urethral Lengthening (UL). AIM: The aim of this cross-sectional and retrospective study was to assess the effect of gGAS with or without UL on several Patient-Reported Outcomes (PROs), and to identify predictors of overall patient satisfaction at follow-up. METHODS: A self-constructed Patient-Reported Outcome Measure (PROM) was sent to transgender men who were ≥1 year after gGAS. The survey comprises 25 questions divided into 5 domains: type of surgery, satisfaction with the appearance and functionality, quality of life, feelings of masculinity, and sexuality. OUTCOMES: Answers to the survey were compared between groups, and a linear regression analysis was conducted to identify predictors of overall patient satisfaction. RESULTS: Of 154 eligible transgender men, the PROM was sent to 118 (77%) willing to participate, and 102 (66%) completed the survey. The majority previously underwent phalloplasty (n = 74;73%) compared to metoidioplasty (n = 28;27%). Urethral Lengthening was performed in 56/102 (55%) participants, 51/74 (69%) in phalloplasty, 5/28 (18%) in metoidioplasty. The mean number of complications and reoperations was significantly higher in the UL group (2.7vs1 and 1.6vs0.4 respectively, both P < .001). Most participants were satisfied to very satisfied with life (75%), the appearance (66%), voiding (59%), the effect of surgery on masculinity (82%), and confirmed that the end surgical result matched their expectations (61%), independently of UL. Lowest scores in satisfaction were observed for the sexual functioning of the neophallus, with 34% satisfied to very satisfied participants. Both satisfaction with the appearance of the neophallus (P < .001) and with voiding (P = .02) were positive predictors of overall patient satisfaction at follow-up, in contrast to the complication and reoperation rate postoperatively (P = .48 and P = .95 respectively). CLINICAL IMPLICATIONS: Transgender men choosing for gGAS with or without UL can be adequately informed on PROs regarding type of surgery, satisfaction with the appearance and functionality, quality of life, feelings of masculinity, and sexuality. STRENGTHS & LIMITATIONS: Study strengths comprise the relatively large cohort, long duration of follow-up, completeness of the data, and innovativeness of the studied outcomes. Limitations are the cross-sectional and retrospective design, possible participation bias and non-validated survey. CONCLUSION: No significant differences in several PROs were observed between participants who chose gGAS with or without UL in this retrospective study. Additionally, according to this study, satisfaction with the appearance of the neophallus and with voiding were positive predictors of overall patient satisfaction at follow-up. de Rooij FPW, van de Grift TC, Veerman H, et al. Patient-Reported Outcomes After Genital Gender-Affirming Surgery With Versus Without Urethral Lengthening in Transgender Men. J Sex Med 2020;18:974-981.
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Personas Transgénero , Estudios Transversales , Humanos , Masculino , Medición de Resultados Informados por el Paciente , Calidad de Vida , Estudios RetrospectivosRESUMEN
Controversy continues over a proposed moratorium on elective genital surgery in childhood for disorders/differences of sex development (DSD). Empirical evidence on patient preference is needed to inform decision-making. We conducted a multicentre survey by cross-sectional questionnaire in 14 specialized clinics in six European countries. The sample comprised 459 individuals (≥ 16 years) with a DSD diagnosis, including individuals with congenital adrenal hyperplasia (CAH) (n = 192), XY DSD with prenatal androgen effect (A) (n = 150), and without (nA) (n = 117). Main outcome measures were level of agreement with given statements regarding genital surgery, including clitoris reduction, vaginoplasty, and hypospadias repair. A total of 66% of individuals with CAH and 60% of those with XY DSD-A thought that infancy or childhood were the appropriate age for genital surgery. Females with XY DSD were divided on this issue and tended to prefer vaginoplasty at a later age (XY DSD-A 39%, XY DSD-nA 32%). A total of 47% of males preferred early hypospadias surgery. Only 12% (CAH), 11% (XY DSD-A), and 21% (XY DSD-nA) thought they would have been better off without any surgery in childhood or adolescence. Individuals who had early genital surgery were more likely to approve of it. Outcome data failed to support a general moratorium on early elective genital surgery. Participant perspectives varied considerably by diagnostic category, gender, history of surgery, and contact with support groups. Case-by-case decision-making is better suited to grasping the ethical complexity of the issues at stake.Trial registration: German Clinical Trials Register DRKS00006072.
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Trastornos del Desarrollo Sexual , Adolescente , Adulto , Estudios Transversales , Trastornos del Desarrollo Sexual/psicología , Trastornos del Desarrollo Sexual/cirugía , Europa (Continente) , Femenino , Genitales/cirugía , Humanos , Masculino , Encuestas y Cuestionarios , Procedimientos Quirúrgicos Urogenitales/psicología , Adulto JovenRESUMEN
STUDY OBJECTIVE: To determine the sexual health and well-being needs of current generations of youth with intersex/Differences of Sex Development (DSD) during transition from pediatric to adult health care. DESIGN: Qualitative narrative analyses, quantitative descriptives, and questionnaires. SETTING: Peer support networks and outpatient clinics. PARTICIPANTS: Eighteen adolescents aged 16-21 years with intersex/DSD. INTERVENTIONS: Semi-structured interviews and/or survey. MAIN OUTCOME MEASURES: Youths learning about bodily differences, their sexual experiences and motives (eg, agency, pleasure), body image, sexual communication inside and outside of health care, and perceived gaps between current and ideal transitional care. Quantitative and qualitative content of the surveys and interviews were analyzed to identify key topics. RESULTS: We found that (1) there is a need for open-minded perceptions of health care providers about what it means to have a sex variation: (2) there is a need for continued support and information about lived realities relating to the diagnosis and treatments as well as experiential aspects of sexuality: and (3) there are communication obstacles with providers in a multidisciplinary team setting as well as with parents. CONCLUSION: A user-centered care perspective for adolescents with sex variations includes their stories and feedback toward service improvement. This pilot study shows that adolescents want to be more involved in their sexual health care in ways that connect to their specific questions. Their desire for information increases as they grow older, and underlines the most essential lesson that health care providers can bring their patients about their bodies: how to care for, respect, and enjoy them.
Asunto(s)
Trastornos del Desarrollo Sexual/diagnóstico , Personas Intersexuales/psicología , Conducta Sexual , Salud Sexual , Transición a la Atención de Adultos , Cuidado de Transición , Adolescente , Femenino , Humanos , Masculino , Países Bajos , Proyectos Piloto , Investigación Cualitativa , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: Surgery is performed in many individuals with disorders/differences of sex development (DSD). Irreversibility of some surgical procedures, lack of information about the procedures, and lack of follow-up care for physical and psychological outcomes, lead to wish for more knowledge from both surgeons and patients. After the consensus conference in 2006, multidisciplinary care is provided to a higher degree with psychological support and more restricted surgical procedures. Outcome studies after genital surgery often lack of patient's perspective. OBJECTIVE: To describe surgical procedures in relation to diagnosis, to evaluate the outcomes of surgery through genital examination, and through patient's and observer's satisfaction with the anatomical and functional result after genital surgery. STUDY DESIGN: In a cross-sectional clinical study performed in six European countries in 2014/15, we have included 500 participants where surgery was performed, from a total of 1040 adolescents (≥16years) and adults with a DSD. Diagnoses included Turner syndrome (n = 301), mixed gonadal dysgenesis (45,XO/46,XY; n = 45), Klinefelter syndrome (n = 218), XYY (n = 1), 46, XY DSD (n = 222) and 46, XX DSD (n = 253). Study protocol included clinical report files, an optional gynecological or urological examination, patient reported outcomes including received surgical interventions, satisfaction with appearance and function after surgery, and impact of the surgical procedure on life. RESULTS: Five hundred participants had received genital or breast surgery, with the highest rate in 46, XY DSD and the lowest in Turner syndrome. Altogether; 240 participants had feminizing surgery, 112 had masculinizing surgery, and 217 underwent gonadectomy. Physicians evaluated anatomical appearance at genital examination as poor in less than 10%. Dissatisfaction with anatomical appearance was reported by 22% of the participants, dissatisfaction with function by 20%. Being (very) dissatisfied with anatomical appearance and function was reported by 13% of the study participants. Most participants reported no impact, or positive impact, of the surgical procedures on their lives, but 29% experienced a negative effect of gonadectomy on their life. DISCUSSION: There might be a selection bias and/or a recall bias for participating in our studies. Due to poor data quality about surgical procedures performed in the past, we also relied on participants memory about surgical procedures in their past. Ideally, patient reported outcomes should be evaluated both before and after surgical procedures. CONCLUSION: A vast majority are satisfied with appearance and function, but still genital or breast surgery have a long-lasting effect on patient's life. Self-reported satisfaction is usually lower than the observer's evaluation regarding both appearance and function.