The impact of audiovisual information on parental anxiety levels prior to hypospadias surgery: A prospective single center cohort study.

BACKGROUND: Most parents have anxiety before a pediatric surgical procedure. Parental anxiety may impair the parents' ability to cope with new or stressful situations while their children are undergoing surgery. By effectively improving the education of parents regarding the diagnosis, treatment, and potential complications of hypospadias and surgical repair, it might be feasible to reduce their anxiety during this process. OBJECTIVE: To determine whether structured audiovisual information would reduce parents' anxiety levels compared to classic verbal information. MATERIAL AND METHODS: The diagnosis was made and, treatment options were explained, and State-Trait Anxiety Inventory Form - State Anxiety (STAI-I) forms were filled out by parents at the first consultation. In the second consultation, parents were divided into structured audio-visual-information (Group-1) and classic verbal information (Group-2) groups. Following these consultations, all parents in both groups filled out STAI-I again. Parents filled out the forms for the last time on the postoperative-14th-day and the results were compared. RESULTS: A total of 124 (51.2%) parents were informed with structured-audiovisual-informational material and 118 parents (48.8%) were informed with classic verbal information. First STAI-I scores were 57.65 ± 5.17 and 56.91 ± 5.28 for Group-1 and Group-2, respectively, and there was no difference between the groups (p = 0.709). The STAI-I scores after the second consultation were 44.82 ± 5.65 and 49.42 ± 2.81 for Group-1 and Group-2, respectively. Parental anxiety decreased in both groups following the second consultation. Notably, a statistically significant superiority was found between the groups in favor of Group-1 (p = 0.001). DISCUSSION: Parents whose children will undergo hypospadias surgery experience significant anxiety. We observed that informing patients adequately and in appropriate language using a suitable method was associated with less anxiety. Preoperative parental anxiety is influenced by several variables, including parent age, parent gender, child age, lack of knowledge, and concerns over complications or pain. Although we are unable to alter the factors of child age and parent gender, we can impact parents' concerns regarding postoperative pain and anesthesia by enhancing their comprehension of the procedure via providing them of sufficient and accurate information. CONCLUSION: Providing parents with structured audio-visual information about the preoperative and postoperative period before hypospadias surgery is associated with lower parental anxiety levels. Supplying structured audiovisual information regarding the preoperative and postoperative periods can help parents have an improved comprehension of the procedure and minimize their anxiety.

Long term follow-up on young adults that underwent hypospadias repair through urethral advancement in childhood.

Assess the long-term outcome on cosmetic appearance, voiding, sexual function, and psychological impact of young adults operated by urethral advance (UA) technique in childhood. Patients over 14 years old, who underwent UA hypospadias repair in our centre (2000-2010) were evaluated. All patients presented mid-distal hypospadias with subcoronal or penile meatus and curvature lower than 20°. The cosmetic appearance, urinary and sexual function, body perception and overall satisfaction were assessed through 5 questionnaires. From 2000 to 2010, 143 children underwent UA hypospadias repair. 36 patients between 14 and 27 years were evaluated. The Hypospadias Objective Penile Evaluation (HOPE) showed an average of 8.75 (+/- 0.97), which indicates a good aesthetic result. Voiding dysfunction symptoms were assessed through the American Urological Association Symptom Index (AUASI) where 80.6% had none or mild symptoms and 19.4% had moderate symptoms. Only 11/36 patients were sexually active, according to the International Index of Erectile Function (IIEF-15) scale, none had erectile dysfunction, and their relationships were satisfactory. Assessment of the body perception through the Genital Perception Scale (GPS) was positive or very positive in 88.9% of the patients. However, the perception of their genitals was positive or very positive in 77.8%, there is a negative correlation between the perception of their body and genitals in 13.9% of the patients. Our results indicate that UA technique for hypospadias repair might be a valid option for the correction of mid-distal hypospadias when indicated.

A multi-site cultural and linguistic adaptation of a hypospadias decision aid for Latinx communities.

INTRODUCTION: Latinx, Spanish-speaking (LSS) patients are more likely to experience decisional conflict and regret about healthcare decisions than non-Hispanic, white, English-speaking patients. OBJECTIVE: To adapt the Hypospadias Hub (Hub), a rigorously developed and tested web-based decision aid (DA), for LSS parents. METHODS: Guided by the Ecological Validity Model (EVM), a heuristic framework was followed to culturally adapt the Hub (see Extended Summary Figure). In stage 1, recommendations were obtained from a focus group with members of the institution's Latinx Community Review Board (Latinx CRB) and semi-structured interviews with pediatricians with Latinx-focused practices. In stage 2, preliminary cultural modifications were made, the Hub was translated into Spanish, and a second focus group with the Latinx CRB was convened to review the revised Hub. In stage 3, semi-structured interviews with LSS parents of healthy boys (i.e., without hypospadias) ≤ 5 years old were conducted to identify any cultural adaptations and/or usability issues regarding the revised Hub. In stage 4, based on parents' feedback, final revisions to the Hub were made. The focus groups and parent interviews were conducted in Spanish; then, the recordings were professionally transcribed in Spanish and translated into English. Interviews with pediatricians were conducted in English; then, the recordings were professionally transcribed. Three coders conducted a qualitative content analysis to identify areas for revision. Changes were applied iteratively. RESULTS: Participants included 3 Latinx CRB members (2 women, 1 did not disclose gender; mean age = 48.3, SD = 21.2), 3 non-Latinx pediatricians (2 women, 1 man; mean age = 49.6, SD = 9.1), and 5 Latinx mothers (mean age = 34.0, SD = 1.26). Participants recommended: 1) featuring video testimonials from Latinx families or including Spanish voice-overs/subtitles; 2) diversifying racial/ethnic/geographic representation and including extended families in photographs/illustrations; 3) adding information about health insurance coverage and circumcision, 4) reassuring parents that the condition is not their fault, 5) considering cultural values (e.g., reliance on expert advice), and 6) clarifying medical terminology. Feedback related to seven EVM dimensions: concepts, content, context, goals, language, metaphors, and methods. DISCUSSION: Participants perceived the Hub to be informative in guiding parents' treatment decisions. Revisions were reasonable and acceptable for a linguistic and cultural adaptation for LSS parents. CONCLUSIONS: We identified and implemented preliminary cultural modifications to the Hub and applied user-centered design methods to test and revise the website. The product is a culturally appropriate DA for LSS parents. Next, English and Spanish-versions of the Hub will be tested in a randomized controlled trial.

The "V-I penoscrotal reconfiguration": A simple technique for the surgical treatment of congenital webbed penis.

OBJECTIVES: To describe a new penoscrotal reconfiguration technique, named "V-I penoscrotal reconfiguration" for the surgical reconstruction of a congenital webbed penis (CWP). METHODS: Twenty-one patients who underwent the "V-I penoscrotal reconfiguration technique" were included in this retrospective study. The CWP severity was assessed according to El-Koutby's classification. Demographic and clinical data, surgical data, and postoperative outcomes were scheduled and analyzed. Specifically, the postoperative follow-up included both physical and psychological assessments at 2 weeks, 1, 6, and 12 months after surgery. Parents' satisfaction degree was quantified by the Likert scale. RESULTS: CWP was grade 3 in 11 (52%) patients, 2 in five (24%), and 1 (24%) in five. Five (24%) CWP were isolated malformations, 11 (52%) were associated with phimosis, three (14%) with hypospadias, and two (10%) with hypospadias and phimosis. There were no postoperative complications and no cases of redo surgery. The cosmetic outcomes were excellent in all cases: the parents' satisfaction score was 4 in 17 (81%) cases and 3 (9%) in the other four cases. CONCLUSIONS: CWP may cause psychological distress and functional problems, especially during sexual intercourse. Its correction in childhood is advocated to prevent psychological and sexual issues. The "V-I reconfiguration technique" is simple, and easy with excellent cosmetic and functional outcomes.

Should we correct hypospadias during childhood? Decision Regret And QUality of Life Assessment (DRAQULA) study.

AIM OF THE WORK: To evaluate patient's satisfaction, Decision Regret And QUality of Life Assessment (DRAQULA) among adolescents (older than 15 years) and adults after hypospadias surgery in childhood. PATIENTS AND METHODS: 234 Patients operated on hypospadias as children in our center and their parents were contacted after they reached the age of 15 years to complete a questionnaire survey to assess satisfaction with the operative result, the regret with the operative decision and the health related quality of life (HRQOL). The survey is based on the Decision Regret Scale available in the literature with a score of 100 meaning maximum dissatisfaction or regret, and on the Kidscreen10 index. Satisfaction was measured on a scale from 1 to 5 with 5 signifying full satisfaction. RESULTS: 81 of 234 patients from 15 to 43 years (mean age 19.7 years) completed the survey (34.6 %). 44 Patients had distal, and 17 proximal hypospadias and the remaining 20 patients could not remember the type of hypospadias they had. The patient's satisfaction with the operative result was 5 (full satisfaction) in 74.1 %, 4 in 18.5 %, 3 in 6.2 % and 2 in 1.2 % (mean satisfaction score 4.7 of 5). Regarding decision regret among patients, 64/81 patients (79.0 %) had no decision regret. Only 14.8 % reported mild and 6.2 % moderate decisional regret (mean decisional regret score 4.8). 71 of 234 parents answered the parents' questionnaire (30.0 %). Fifty-eight (81.7 %) had no decision regret. 13 parents (18.3 %) had decision regret; 10 parents (14.1 %) reported mild, 2 parents (2.8 %) moderate, and only one parent (1.4 %) reported strong decisional regret. The mean HRQOL T-score was 55.9 (SD 10, control Group of adolescent males from 12 to 18 years.) and thus corresponded to the average of the reference normal population. DISCUSSION: In this study, only 19.7 % had decision regret as compared to 50-65 % reported in literature. The decision regret scale of O'Connor needs to be revalidated as even candidates who approve of the decision of early surgery have a score less than 25 and considered to have decision regret. CONCLUSION: The results of the survey showed that 90 % of the patients were satisfied with early hypospadias surgery with average HRQOL and low level of decisional regret in patients as well as parents. The findings support the current practice of operating hypospadias in early childhood.

Hypospadias surgery: understanding parental emotions, decisions and regrets.

This paper builds an argument about genital surgery in the context of medical treatment of children and young people with variations in sex characteristics. First, I set out what is known from existing research including psychological research, surgical follow-up studies and parental regret studies. Second, I present an analysis of surgeons' talk about children, young people and parents in relation to genital surgery. This paper focuses most specifically on hypospadias surgery, but the argumentation is relevant for other kinds of genital surgery carried out in the context of genital variations. The questions guiding this paper are: what research evidence supports hypospadias surgery and what research evidence brings this surgery into question? How might a new interpretation of the evidence, in light of psychosocial research and human rights concerns, contribute to a new perspective on elective genital surgery on minors with variations in sex characteristics? I draw out implications for clinicians supporting parents to decide whether a surgical pathway is the best option for their child.

The hypospadias-specific health-related quality of life conceptual framework: a scoping review of the literature.

PURPOSE: Health-related quality of life (HRQoL) is an important yet understudied construct for individuals with hypospadias (HS). An important barrier towards understanding HRQoL and integrating it into research and clinical care for people with HS is the absence of an underlying conceptual framework to illustrate this construct. We propose a conceptual framework for HS-specific HRQoL based upon a scoping review of the HS literature. METHODS/MATERIALS: We conducted a literature review of articles published between 1989 and 2019. Our search in Embase and Pubmed used the keyword "hypospadias" in combination with "quality of life" and "patient-reported outcomes." We used thematic analysis of the resulting publications to identify core HRQOL domains. From these results and review of HRQoL literature in other pediatric populations, we developed a conceptual framework representing HS-specific HRQoL. RESULTS: We identified five domains of HRQOL previously studied in research with youth and adults with HS: penile appearance, voiding, social interaction, sexual health, and psychological or behavioral function. We propose a model of HS-specific HRQoL comprised of these domains and their areas of overlap, based upon the findings and conceptual mapping of our literature review. CONCLUSION: This novel conceptual framework provides a foundation for understanding disease-specific HRQoL in individuals with HS and may serve as a guide for the conduct of future qualitative studies of the HS population. The overlapping biopsychosocial domains illustrate the possible effects of HS on day-to-day life. This framework may guide future surgical, clinical, and behavioral interventions that aim to improve medical care and quality of life outcomes for HS patients.

Long-Term Outcomes of Distal Hypospadias Repair: A Patients' Point Of View.

PURPOSE: To assess the long-term outcomes of patients treated for distal hypospadias. Assessment of long-term follow-up for a homogeneous population with hypospadias is difficult and there has consequently been a paucity of publications in this regard. MATERIALS AND METHODS: A retrospective review was carried out to compile cases of distal hypospadias operated at our center between 1990 and 1999 according to the MAGPI procedure. Four parameters were evaluated based on four validated questionnaires: Health-related quality of life (SF-36), Genital self-perception (PPS), Self-esteem (Rosenberg Self-Esteem Scale), and Erectile function (IIEF). RESULTS: A total of 77 patients who had undergone MAGPI surgery for hypospadias during the specified period were selected. Sufficient clinical data were available for 51 patients and only 15 of these patients were included, after a median follow-up of 22 years (20-26). Their outcomes were compared with those for a population of 15 matched circumcised men and 15 matched uncircumcised men. No significant difference was found between the patients and the control groups in terms of the score for quality of life (p = .29). There were, however, significant differences in the scores for self-perception of the penile cosmetic appearance (13.3 vs. 15.8; p < .01), self-esteem (30.6 vs. 35.8; p < .01), and erectile function (31.4 vs. 33.7; p = .04) between the patients and the controls. Lower self-esteem correlated with poor genital self-perception (r  = .92). CONCLUSION: This study confirms that adult patients operated for distal hypospadias have poor genital self-perception. This poor genital perception correlated with lower self-esteem.

Coping styles in patients with hypospadias.

OBJECTIVE: The objective of this study is to investigate the coping styles used by patients with hypospadias. Long-term hypospadias studies generally show satisfying outcomes, but some report a lower quality of life (QoL) or poorer psychosocial adjustment, particularly in patients with proximal hypospadias. A lower QoL or psychosocial adjustment was found to be associated with passive coping styles in other pediatric patient populations. Hypothetically, patients with hypospadias also develop different coping styles due to medical experiences in childhood, leading to the lower QoL outcomes on the long term. However, coping styles of patients with hypospadias have never been analyzed. PATIENTS AND METHODS: Adult men with hypospadias repair in childhood were recruited (n = 55; aged 19.9 [IQR 19.2-22.1]). Coping styles were determined with the Utrecht Coping List (UCL) and results compared with a reference group of male students (n = 55, age 20-30 years, no medical history). Sub analysis of coping styles of the hypospadias groups was done based on three items: severity of hypospadias, time of last hypospadias surgery and occurrence of postoperative complications. RESULTS: Compared to the reference groups, patients with hypospadias had higher scores on Avoidance (P < 0.05), particularly patients who had ≥1 postoperative complication or proximal hypospadias. Patients with proximal hypospadias also had lower scores on Seeking Social Support compared to the reference group (P < 0.05). Within the hypospadias group, coping style scores did not differ based on severity of hypospadias, timing of surgery or postoperative complications. CONCLUSION: Patients with hypospadias, particularly those with proximal hypospadias or a postoperative complication, more often use an avoiding coping style compared to a reference population. Attention to coping styles during the follow-up of patients with hypospadias might help to improve the QoL in these patients.

Parental perspectives on decision-making about hypospadias surgery.

INTRODUCTION: Many parents who choose hypospadias repair for their son experience decisional conflict and regret. The utilization of a shared decision-making process may address the issue of decisional conflict and regret in hypospadias repair by engaging both parents and physicians in decision-making. OBJECTIVE: The objective of this study was to develop a theoretical framework of the parental decision-making process about hypospadias surgery to inform the development of a decision aid. STUDY DESIGN: We conducted semistructured interviews were conducted with parents of children with hypospadias to explore their role as proxy decision-makers, inquiring about their emotions/concerns, informational needs, and external/internal influences. Interviews were conducted until no new themes were identified, analyzing them iteratively using open, axial, and selective coding. The iterative approach entails a cyclical process of conducting interviews and analyzing transcripts while the data collection process is ongoing. This allows the researcher to make adjustments to the interview guide as necessary based on preliminary data analysis in order to explore themes that emerge from early interviews with parents. Grounded theory methods were used to develop an explanation of the surgical decision-making process. RESULTS: Sixteen mothers and one father of seven preoperative and nine postoperative patients (n = 16) with distal (8) and proximal (8) meatal locations were interviewed. Four stages of the surgical decision-making process were identified: (1) processing the diagnosis, (2) synthesizing information, (3) processing emotions and concerns, and (4) finalizing the decision (Extended Summary Figure). Core concepts in each stage of the decision-making process were identified. Primary concerns included anxiety/fear about the child not waking up from anesthesia and their inability to be present in the operating room. Parents incorporated information from the Internet, medical providers, and their social network as they sought to relieve confusion and anxiety while building trust/confidence in their child's surgeon. DISCUSSION: The findings of this study contribute to our understanding of decision-making about hypospadias surgery as a complex and multifaceted process. The overall small sample size is typical and expected for qualitative research studies. The primary limitation of the study, however, is the underrepresentation of fathers, minorities, and same-sex couples. CONCLUSIONS: This study provides an initial framework of the parental decision-making process for hypospadias surgery that will inform the development of a decision aid. Future stages of decision aid development will focus on recruitment of fathers, minorities, and same-sex couples in order to enrich the perspectives of our work.

Community engagement of adolescents in the development of a patient-centered outcome tool for adolescents with a history of hypospadias repair.

INTRODUCTION: Hypospadias may lead to long-term issues with urination, sexual function and psychosocial well-being. Limited evidence exists regarding the healthcare communication preferences of male adolescents regarding sensitive topics. OBJECTIVE: The purpose of this qualitative study was to explore the healthcare communication preferences of male adolescents regarding sensitive topics (e.g. urinary and sexual issues) and engage them in the initial stages of development of a patient-centered outcome tool for adolescents with a history of hypospadias repair. STUDY DESIGN: A multidisciplinary team with communication design expertise, pediatric urology experts, and health services researchers developed a self-reported toolkit for adolescent patients who had hypospadias repair as children. The toolkit featured short writing/diagramming exercises and scales to facilitate participant reflections about genital appearance, urination, sexual function, and psychosocial well-being. We recruited students from two local high schools for two focus groups to obtain feedback about the usability/acceptability of the toolkit's appearance/content. We inquired about language preferences and preferred format and/or setting for sharing sensitive information with researchers. The focus groups were audio recorded, professionally transcribed, checked for accuracy, and analyzed by two coders using qualitative content analysis. Major themes and subthemes were identified, and representative quotes were selected. RESULTS: We conducted two focus groups in January 2018 with 33 participants, aged 14-18 years. Participants preferred language that would make patients feel comfortable and serious, clinical language rather than slang terms/sexual humor (Extended Summary Table). They recommended avoidance of statements implying that something is wrong with a patient or statements that would pressure the patient into providing answers. They suggested fill-in-the-blank and open-ended responses to encourage freedom of expression and colorful graphics to de-emphasize the test-like appearance of the toolkit. Most participants preferred a toolkit format to a one-on-one interview to discuss sensitive topics such as urinary or sexual issues. Participants would prefer either a male interviewer or would like to have a choice of interviewer gender for individual qualitative interviews, and they recommended a focus group leader with a history of hypospadias repair. DISCUSSION: This study provides a rich description of a group of male high school students' experiences with healthcare providers and researchers. Its qualitative design limits generalizability, and our findings may not be similar to those of adolescents with a history of hypospadias repair. CONCLUSION: We used focus group feedback on the toolkit prototype to refine the tool for use in a future study of adolescents with a history of hypospadias repair.

No difference in cognitive performance or gender role behavior between men with and without hypospadias.

BACKGROUND: Hypospadias is a common malformation of the male external genitalia that results in urethral displacement with different levels of severity. Male genital development during the fetal period is dependent on androgen function, while the etiology of hypospadias differs and can be multifactorial. The psychosocial outcome is sometimes affected, but according to several studies acceptable. The question of whether hypospadias is associated with differences in psychosexual development has been investigated previously, with mixed results. There are no previous investigations of cognitive abilities in men with hypospadias. OBJECTIVE: The aim of this study was to investigate whether hypospadias is associated with differences in performance on cognitive tests and/or gender role behavior. PARTICIPANTS: Eighty-six men with hypospadias were compared to male and female controls from the general population. PROCEDURE: Cognitive tasks, previously shown to yield group level sex differences and questions regarding self-reported childhood gender role behavior, were administered either at an outpatient clinic visit or via online participation. RESULTS: The cognitive performance of men and women in the control groups differed significantly in the expected directions. Men and women also differed on self-reported childhood gender role behavior questions. There were no significant differences between men with and without hypospadias on any of the measures. Men with proximal hypospadias performed slightly lower on many of the cognitive tasks in comparison to men with distal hypospadias and controls. CONCLUSION: In general, hypospadias is not associated with differences in performance on cognitive tests that typically yield sex differences or with altered gender role behavior in childhood. Further studies on cognitive abilities in boys and men with proximal hypospadias are warranted.

Psychiatric symptoms in men with hypospadias - preliminary results of a cross-sectional cohort study.

AIM: Population studies have shown an increased risk of neurodevelopmental disorders in males born with the congenital condition hypospadias, where the opening of the urethra is on the underside of the penis. We investigated overall psychiatric morbidity in cases and matched controls. METHODS: This study compared 167 men born with hypospadias from 1959 to 1994 in Stockholm or Gothenburg in Sweden using hospital registers. They were compared with controls from the Swedish population registry, who were contacted by regular mail and students who were recruited by local advertisements. The total sample had a mean age of 33.5 years (range: 19-54). They completed self-rating scales for depressive, anxiety and obsessive-compulsive symptoms and symptoms of attention deficit hyperactivity disorder. In addition, 33 cases and 47 controls underwent psychiatric morbidity interviews that covered the 17 most common psychiatric diagnoses. RESULTS: A fifth (21%) of both the cases and controls reported current or previous psychiatric symptoms. There were no significant differences in self-rated depression, anxiety or obsessive-compulsive disorder symptoms between the patients and controls or between the different phenotype groups. The distribution was not significantly affected by the severity of hypospadias. CONCLUSION: Psychiatric morbidity was no higher in men with hypospadias than population-based controls.

Postoperative behavioral changes in Chinese children undergoing hypospadias repair surgery: A prospective cohort study.

BACKGROUND: The perioperative period can be psychologically challenging, and children may exhibit behavioral changes following surgical anesthesia. It is unknown whether children in China have additional risk factors associated with negative behavioral changes. OBJECTIVES: The aim of this study was to investigate the incidence of behavioral changes in children after hypospadias repair surgery and to identify potential risk factors associated with negative behavioral changes. METHODS: A prospective cohort of 177 children aged 2-12 years scheduled for hypospadias repair surgery from 2016 to 2017 was studied. The primary outcome was the incidence of behavioral changes on postoperative days 14 and 30 evaluated with the Post-Hospitalization Behavioral Questionnaire. Data collected included demographic data, anesthesia details, procedure details, admission details, child anxiety, child temperament, pain, and emergence delirium. Multivariable logistic regression was used to identify risk factors associated with postoperative negative behavioral changes. RESULTS: A total of 60.5% (107/177) of children exhibited negative postoperative behavioral changes on day 14 and 46.5% (79/170) exhibited changes on day 30 after the surgery. Approximately 2.3% (4/177) and 2.4% (4/170) of children showed improved behavior on postoperative days 14 and 30, respectively. The frequency of temper tantrums changed the most. The logistic regression results suggested that a younger age (odds ratio: 0.86; 95% confidence interval 0.76-0.96), emotional temperament (odds ratio: 1.1; 95% confidence interval 1.0-1.2) and maternal education (odds ratio: 2.2; 95% confidence interval 1.1-4.5) were associated with negative postoperative behavioral changes on day 14. On day 30, a younger age (odds ratio: 0.87; 95% confidence interval 0.77 to 0.98) was the only factor associated with negative postoperative behavioral changes. CONCLUSION: For children undergoing hypospadias repair surgery in our institution, approximately three in five showed postoperative behavioral changes. In addition to a younger age and a higher maternal education, an emotional temperament is associated with a high incidence of negative postoperative behavioral changes.

Gender identity in patients with 5-alpha reductase deficiency raised as females.

BACKGROUND AND OBJECTIVE: 5-Alpha reductase type 2 deficiency (5-ARD) is a rare disorder of sex development. The lack of 5-alpha reductase, an enzyme that converts testosterone into dihydrotestosterone, results in external genitalia that may appear female, or predominantly male, albeit undervirilized, or, more often, ambiguous. METHODS: This study describes a series of patients with 5-ARD raised as female, focusing on aspects related to gender identity. Following a retrospective chart review, patients with 5-ARD were invited to return to the clinic to enable their gender identity to be assessed using an 11-item structured in-house questionnaire. The Golombok-Rust Inventory of Sexual Satisfaction was applied to patients who had initiated their sexual life. RESULTS: Six patients aged >15 years with 5-ARD and raised as female were included. Most patients were diagnosed late: two before and four after puberty. The mean length of the phallus was 2.8 cm (0.5-5.0). Reasons for seeing a doctor included genital appearance (n = 3), amenorrhea/absence of breast development (n = 2), and changes in gender role attitudes (n = 1). According to the gender identity assessment, 4 patients identified as female, 1 as male, and 1 as both genders. Only the patient identified as male requested gender re-assignment. Of the two patients who had initiated their sexual life, sexual satisfaction was found to be good in one and poor in the other due to vaginal discomfort during intercourse. CONCLUSION: In the present series, the majority of undervirilized patients with a diagnosis of 5-ARD raised as female were in complete conformation with being female and described themselves as heterosexual. The more virilized patients were those least in conformity with their female-assigned gender.

Shaping parents, shaping penises: How medical teams frame parents' decisions in response to hypospadias.

INTRODUCTION: Psychological research provides insights into how parents approach medical decisions on behalf of children. The medical decision of concern here is the surgical alteration of a hypospadic penis, whose urethral opening does not appear at the tip. Hypospadias surgery is routinely carried out in infancy, despite criticism by international organizations concerned about children's rights. The focus of this study is on the framing of hypospadias surgery. OBJECTIVES: The objective was to examine how health professionals frame hypospadias and hypospadias surgery in medical and non-medical ways. DESIGN: This was a qualitative study designed to build on the experimental research of Streuli et al. who investigated how medical versus non-medical information affects decision-making about non-essential childhood genital surgery. METHODS: Semi-structured interviews were undertaken with 32 health professionals. Theoretically informed thematic analysis was used to examine how health professionals talk about hypospadias surgery and about supporting parents to make treatment decisions. RESULTS: The analysis suggests that medical professionals' engagement with parents underestimates the effect of framing in influencing parental decisions about hypospadias surgery. Some psychological specialists in this area are actively framing hypospadias in ways that enable some parents to choose a non-medical pathway. Psychologically informed ways of talking about a child's genital difference focus on psychological qualities, including affect, well-being, and unconditional positive regard. CONCLUSIONS: The best interests of children with hypospadias may well be served when psychological pathways are highlighted, providing opportunities to support the flourishing of children whose genital appearance raises the question of medical intervention. Statement of Contribution What is already known on this subject? Framing significantly affects medical decision-making in ways that people typically fail to perceive. Parents frequently consent to non-essential hypospadias (penile) surgery for their sons, despite the risks and ethical concerns. What does this study add? Medical teams could do more to consider framing when counselling parents about their son's hypospadias. Psychological specialists can help parents to frame their son's penile difference in terms of well-being and love. The best interests of children with hypospadias may be served by highlighting psychological care pathways.

Psychosocial and Sexual Outcomes in Adolescents following Surgery for Proximal Hypospadias in Childhood.

PURPOSE: We evaluated psychosocial outcomes, psychosexual development and sexual function in adolescents who had undergone surgery for proximal hypospadias. We hypothesized that these outcomes would be impaired compared to peers. MATERIALS AND METHODS: We identified 55 males age 14 years or older who underwent surgery for penoscrotal to perineal (intraoperatively defined) hypospadias between 1996 and 2005. A total of 33 patients with a median age of 17.5 years (range 14 to 25) answered a Web based questionnaire with self-constructed questions, completed the validated Psychological General Well-Being Index, Body-Esteem Scale for Adolescents and Adults and Penile Perception Score, and underwent clinical evaluation. A total of 31 patients with distal hypospadias (median age 19 years, range 14 to 35) and 25 age matched healthy men (17.5 years, range 14 to 25) served as controls. RESULTS: Interest in sex, age at sexarche and satisfaction with sexual experiences were comparable between patients and controls. Three patients with proximal hypospadias (10%) and 1 control (4%) reported occasional erectile problems. Three patients with proximal hypospadias (11%), 1 patient with distal hypospadias (3%) and 1 control (4%) affirmed anejaculation. There were no differences in results between validated questionnaires. Patients with proximal hypospadias were more dissatisfied with penile length (39%) compared to controls (12%, p = 0.049). Concerning physical contact, 10 patients (38%) expressed uncertainty. Extra support in school was more frequent among patients with proximal hypospadias (p = 0.024 vs distal hypospadias, p = 0.068 vs control group). CONCLUSIONS: Despite concerns regarding penile length, sexual experiences were comparable to those of other adolescents, although more than a third of patients with proximal hypospadias demonstrated uncertainty on questions relating to desire for physical contact. Specialized tutoring in school was more common in patients with proximal hypospadias. Continuous followup throughout childhood allowing extra time for age adequate information and support is warranted.