Effects of patients' understanding and choice of surgical types on postoperative outcomes of Peyronie's disease: a single-center retrospective study of 108 patients.

Surgical correction can be considered for treating patients with a chronic phase of Peyronie's disease (PD) and persistent penile curvature. In clinical practice, some patients pay too much attention to surgical complications and refuse the recommended feasible surgical types. Meanwhile, they require operations according to their preferences. This study aimed to evaluate the effects of patients' own choice of surgical type on postoperative satisfaction. This retrospective study analyzed data from 108 patients with PD who underwent surgical correction according to doctors' recommendations or patients' own demands. The objective and subjective surgical outcomes were assessed. Patients' understanding of the disease was analyzed using a questionnaire survey. Objective measurements of surgical outcomes, including penile straightening, penile length, and sexual function, in patients who received the recommended surgery, were similar to those in patients who did not accept the recommended surgery. However, subjective evaluations, including erectile pain, discomfort because of nodules on the penis, and decreased sensitivity in the penis, were more obvious in patients who did not follow doctors' recommendations. In addition, a questionnaire survey showed that understanding PD and the purpose of surgery of patients who did not follow doctors' advice were inappropriate, as they did not conform to the principle of treatment. The present study showed that surgical correction seemed to be an objectively effective option in the management of patients in the stable chronic phase of PD. Low patient satisfaction might be related to patients' lack of correct understanding of the disease and its treatment strategy as well as unrealistic expectations.

Early Genital Surgery in Disorders/Differences of Sex Development: Patients' Perspectives.

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.

Evolving indications for surgical intervention in patients with differences/disorders of sex development: Implications of deferred reconstruction.

Rare medical conditions are difficult to study due to the lack of patient volume and limited research resources, and as a result of these challenges, progress in the care of patients with these conditions is slow. Individuals born with differences of sex development (DSD) fall into this category of rare conditions and have additional social barriers due to the intimate nature of the conditions. There is also a lack of general knowledge in the medical community about this group of diverse diagnoses. Despite these limitations, progress has been made in the study of effective ways to care for patients who are born with chromosomal or anatomical differences of their internal reproductive organs or external genitalia. Advocacy groups have placed a spotlight on these topics and asked for a thoughtful approach to educate parents of newborns, medical providers, and the adolescents and young adults themselves as they mature.1 There is growing interest in the approaches to surgical reconstruction of the genitalia and the management of internal gonads, specifically the timing of procedures and the indications for those procedures.2 Advocates suggest deferring surgical procedures until the affected individual can participate in the decision-making process. This approach requires a roadmap for addressing the long-term implications of delayed surgical management. Presented here is a review of the specific issues regarding the complex management of the various categories of DSD.

Utilization of a shared decision-making tool in a female infant with congenital adrenal hyperplasia and genital ambiguity.

Background Shared decision-making (SDM) is the process by which patients/families and providers make healthcare decisions together. Our team of multidisciplinary disorders of sex development (DSD) has developed an SDM tool for parents and female patients with congenital adrenal hyperplasia (CAH) and associated genital atypia. What is new Elective genital surgery is considered controversial. SDM in a patient with genital atypia will allow patient/family to make an informed decision regarding surgical intervention. Case presentation Our patient is a 2.5-year-old female with CAH and genital atypia. Initially, her parents had intended to proceed with surgery; however, after utilizing the SDM checklist, they made an informed decision to defer urogenital sinus surgery for their daughter. Conclusions We successfully utilized an SDM tool with parents of a female infant with CAH and genital atypia, which allowed them to make an informed decision regarding surgery for their daughter. Future directions include a prospective enrolling study to determine the generalizability and applicability of SDM with families of children diagnosed with CAH.

Does Patient-centered Care Change Genital Surgery Decisions? The Strategic Use of Clinical Uncertainty in Disorders of Sex Development Clinics.

Genital surgery in children with ambiguous or atypical genitalia has been marred by controversies about the appropriateness and timing of surgery, generating clinical uncertainty about decision making. Since 2006, medical experts and patient advocates have argued for putting the child's needs central as patient-centered care. Based on audio recordings of 31 parent-clinician interactions in three clinics of disorders of sex development, we analyze how parents and clinicians decide on genital surgery. We find that clinicians and parents aim for parent-centered rather than infant-centered care. Parents receive ambivalent messages about surgery: while clinicians express caution, they also present the surgery as beneficial. We examine how parents and clinicians reach agreement about surgery-differentiating parents who push strongly for surgery from parents who do not express any preconceived preferences about surgery and parents who resist surgery. We conclude that clinicians use clinical uncertainty about surgery strategically to direct parents toward perceived clinically appropriate decisions.

Intersex Activists in Israel: Their Achievements and the Obstacles They Face.

This article focuses on the dynamic between the medical policy on intersex bodies and intersex activists in Israel. Recently, in many countries changes have taken place in medical guidelines regarding intersex patients and laws that regulate medical practices and prohibit irreversible surgeries for intersex babies for cosmetic reasons and without the patient's consent. In Israel, intersex activists are limited by several factors. On the one hand, they are influenced by the achievements of intersex activism around the world but on the other, the pathologizing medical discourse and socio-medical practices, which include early diagnosis, early irreversible surgeries, and secrecy surrounding intersexed bodies, present obstacles to achieving bodily autonomy for intersex individuals and social recognition of different sex development. Nevertheless, intersex activists are attempting to find different social and media spaces in which to achieve public acknowledgement and future bodily autonomy for intersexed people and seeking medical professionals' cooperation. Recently, the Israeli Ministry of Health published a new circular for intersex/DSD patients, and while it does not clearly forbid irreversible surgeries, it provides information about the complexities of intersex people and their experience.

Searching for harmony: parents' narratives about their child's genital ambiguity and reconstructive genital surgeries in childhood.

AIM: This paper is a report of a narrative study of parents' experiences of their child's genital ambiguity and the place reconstructive surgeries have in their lives. BACKGROUND: Increasingly, the use of early reconstructive genital surgery has come under criticism. Few studies have explored parents' inclusion in the surgical decision-making process, their experiences of their child's surgeries or of parenting a child born with ambiguous genitalia. METHOD: Narrative interviews about parents' experiences of having and caring for a child of uncertain gender and their rationale for reconstructive surgeries were conducted with 15 parents between October 2004 and February 2006. Interviews were recorded, transcribed verbatim and analysed in a narrative analysis framework. RESULTS: Narrative analysis resulted in three increasingly contextual and conceptual levels of stories. Connections between stories gave the basis for the synthesis of the data; interpretation identified three elements of shock, protection and anxiety, which influenced the parents. The parents identified the need for early and ongoing support from healthcare professionals. The parents expected professionals to be knowledgeable about the dilemmas surround disorders of sex development and have experience in managing care for themselves and their child. CONCLUSION: For the parents seeking a sense of harmony between their child's genital ambiguity and gender during childhood was important. Searching for this harmony became a dynamic and evolving process, which was built on their knowledge and increasing willingness to engage with professionals, negotiate their social worlds, emotional responses and belief systems.

Reduction clitoro-labioplasty versus clitoro-labiectomy in managing adult onset clitoro-labiomegaly.

OBJECTIVES: To compare a new procedure of reduction clitoro-labioplasty to clitoro-labiectomy in the management of adult onset clitoro-labiomegaly, and to show the disadvantages of the latter procedure that produces female genital mutilation and sexual dysfunction. METHODS: This controlled, descriptive, comparative and prospective cohort study was performed at Kasr El-Aini School of Medicine, Cairo University, Egypt. 47 cases of clitoro-labiomegaly, 12 with known causes of intersex, were diagnosed and treated by reduction clitoro-labioplasty. In addition, a control group of 53 more cases, 6 with known causes of intersex, were followed after treatment by clitoro-labiectomy. Clitoro-labioplasty was performed by excision of the anterior part of the fused corpora after separation at the glans-corporal junction and a reduction in the size of the remaining part of the corpora to reform a normal clitoral size. The neurovascular bundles were essentially preserved during this procedure. The protruded parts of the labia minora are then excised to preserve their normal dimensions. The main outcome measures were the postoperative anatomical result, patient's satisfaction, the pre- and postoperative sex scoring, and sexuality. RESULTS: Restoration of normal anatomy was successfully obtained after clitoro-labioplasty compared to partial or complete loss of these sensitive parts after clitoro-labiectomy. In addition, significant operative and postoperative complications were recorded in 27 cases with clitoro-labiectomy compared to none of the clitoro-labioplasty cases. The sex scores and sexuality improved significantly after the clitoro-labioplasty operation compared to clitoro-labiectomy (p < 0.005). Normalization of the sex scores and sexuality was found to be significantly related to preservation of critical clitoral length necessary for producing clitoral orientation and interest in sexuality. CONCLUSION: The new clitoro-labioplasty technique is able to preserve proper clitoral and labial anatomy and restore normal sexuality. Therefore it must be considered an essential line of treatment for clitoro-labiomegaly.

Parents' narratives about their experiences of their child's reconstructive genital surgeries for ambiguous genitalia.

AIM: The aim of this study was to initiate an exploration of parents' understanding and experiences of their child's reconstructive genital surgeries for ambiguous genitalia. BACKGROUND: The determination of gender for a child born with ambiguous genitalia is a complex medical and social process influenced by biological, psychological, social and cultural factors. Two main approaches exist; one promotes interventions (optimal gender policy) while the other suggests delaying interventions (informed consent policy) until the child can contribute to the decision. METHODS: An exploratory narrative inquiry design was chosen. Data were collected through narrative interviews with a purposive non-random sample of 10 parents of eight children (aged 0-11 years) who had ambiguous genitalia. RESULTS: Parents' stories reflected strong protective instincts towards their children along with feelings of shock and disbelief. Parents' social construction of gender influenced their attitudes and beliefs about their child's ambiguous genitalia and the need for surgery. Parents' desired to be 'good parents' and do what they perceived as 'right' for their child. They considered genital surgery as a necessity primarily relying on medical advice to guide them at times of uncertainty and confusion. Parents rarely shared stories about their child's surgeries/genitalia outside of the couple relationship and these stories were often referred to as 'secrets'. CONCLUSION: Having a child with ambiguous genitalia was perceived as problematic and brought about changes in roles, responsibilities, goals and social status as a parent beyond those usually associated with parenthood. RELEVANCE TO CLINICAL PRACTICE: These early findings help increase awareness of parents' experiences and of the problems and emotional challenges that parents face when their child is born with genital ambiguity.

Patients' pelvic goals change after initial urogynecologic consultation.

OBJECTIVE: The objective of the study was to determine the effect of initial urogynecologic consultation on the number and type of patient goals. STUDY DESIGN: Charts of women who underwent initial urogynecology consultation were reviewed. Patient goals were collected before and after their consultation. Investigators categorized goals into 6 categories. Category and number of goals were compared before and after their first visit. Predictors of change and clinical associations were assessed. RESULTS: Sixty-three women with a mean age of 53 (range, 18-83) years reported a total number of 313 goals. The number of patients' postconsultation goals was higher than the number of preconsultation goals, (median of 3 +/- 1.2 vs 2 +/- 1.2, respectively; P < .003). Women were less likely to report" symptom" and "information-seeking" goals (P < .002 and P < .03, respectively) but more likely to report treatment goals after consultation (P < .001). CONCLUSION: Urogynecologic consultation affects patients' goals. It is important to reassess goals following initial consultation.

Patient preparedness: an important predictor of surgical outcome.

OBJECTIVE: The objective of the study was to determine the influence of patient readiness for reconstructive pelvic surgery on surgical outcomes. STUDY DESIGN: After undergoing standardized informed consent, consecutive women planning pelvic surgery completed a questionnaire assessing their knowledge and readiness for surgery pre- and postoperatively. Subjects underwent standardized follow-up 3 months after surgery, including postoperative satisfaction questionnaire and validated condition specific quality of life (QOL) and global improvement scales. All subjects had standardized urogynecologic evaluation pre- and postoperatively. RESULTS: The 79 women who completed preparedness questionnaires self-rated their symptom severity as severe (34%), moderate (58%), and mild (8%). Preparedness was associated with postoperative improvement (P = .003), complete satisfaction (P = .0005), and improved QOL (P = .02). Objective measures of cure did not differ by preparedness. CONCLUSION: Readiness for reconstructive pelvic surgery is measurable and associated with patient-perceived surgical outcome. Satisfaction, symptom improvement, and QOL are strongly associated with patients' expectations and preparedness.

The parental perspective regarding the contralateral inguinal region in a child with a known unilateral inguinal hernia.

PURPOSE: The management of the contralateral region in a child with a known inguinal hernia has been debated by surgeons for more than 50 years. However, the perspective of the child's parents has not been sought, and this study was designed to evaluate parental views on this topic. METHODS: After IRB approval, all patients less than 10 years of age with a unilateral inguinal hernia seen by the senior surgeon were studied prospectively from November 2001 through February 2003. A study sheet was given to the parents about the nature of an inguinal hernia, the incidence of 20% to 40% of a contralateral patent processus vaginalis (CPPV), and the possible surgical options (perform repair of the unilateral inguinal hernia only, repair the unilateral inguinal hernia with contralateral exploration and repair if indicated, or unilateral inguinal hernia repair with laparoscopy through the ipsilateral hernia sac and repair of a CPPV if discovered). The parents of the last 113 patients requesting contralateral inspection were asked their motives (convenience or anesthesia concerns) regarding their decision. RESULTS: One hundred sixty-seven patients comprise the study group. Twelve parents chose unilateral repair alone, 13 chose bilateral incisions with contralateral repair if a CPPV was found, and 142 chose unilateral hernia repair with laparoscopic contralateral inspection followed by repair if needed. Regarding their motives, 90 of the last 113 parents requesting contralateral inspection indicated that convenience was the primary motive. Surprisingly, only 21 exhibited concerns about their child undergoing a second anesthesia. CONCLUSIONS: When presented options regarding management of a unilateral inguinal hernia, parents preferred laparoscopic inspection and repair of the contralateral region, if needed, more for convenience than for concerns about a second procedure and anesthesia.

Psychological reaction by children of various ages to hospital care and invasive procedures.

Hospital care and treatment by invasive procedures produce significant psychological effects on children. Urogenital surgery deserves particular study. The developmental aspects of different ages are highly relevant. A proposed multidimensional model of contributing factors includes type of medical treatment, any previous surgery, the child's temperament, coping strategies of both child and parents and their psychological health, support from parents and staff, information and psychological preparation and age of the child. Up to now, there have been no clear recommendations as to the best age for elective surgical procedures in children according to psychological risk. In general, older children adapt better psychologically after hospital care. The literature, however, tends to advise elective surgery before 12 mo of age, based on apparent psychological adjustment in the very young after surgery and from a desire to shorten the period of living with the malformation/disorder. However, increased follow-up surgery from early interventions gives a higher risk of psychological problems. More well-controlled studies are needed before final evaluation of the impact of surgical interventions on psycho-social symptoms according to age group. In this analysis a multidimensional model is preferred.

Case consultation: ablatio penis.

In male infants, traumatic ablation of the penis, with or without loss of the testicles may occur as a sequel to mutilatory violence, accidental injury, or circumcision error. Post-traumatically, one program of case management is surgical sex reassignment to live as a girl, with female hormonal therapy at the age of puberty. The other program is genital reconstructive surgery to live as a boy, with male hormonal therapy at puberty if the testicles are missing. In both programs, the long term outcome is less than perfect and is contingent on intervening variables that include societal ideology; surgical technology; juvenile and adolescent timing and frequency of hospital admissions construed by the child as nosocomial abuse; development of body image; health and sex education; fertility versus sterility; coitus and orgasm; possible lesbian orientation if living as a girl; and long-term cost accounting, including the psychic cost of being a pawn in possible malpractice litigation on whose disability a very large fortune in compensation may devolve. There is, as yet, no unanimously endorsed set of guidelines for the treatment of genital trauma and mutilation in infancy, and no provision for a statistical depository for outcome data.