Perspectives on the Issue: Parents or Peers - 14 Perspectives on the Issue
However, careful evaluation and selection criteria must be developed to ensure the reviewers are both experts and unbiased in their decision-making. The ultimate goals of DSD management include a stable sex identity, optimal sexual function and body image, preservation of fertility, and minimizing intervention.
Considerations and strategies for such approaches will be discussed in the remainder of this manuscript. A child born with DSD represents an enormous challenge to parents and the health care team at the birth event.
Parenting adolescents with cystic fibrosis: the adolescents’ and young adults’ perspectives
The ability to diagnose DSD prenatally, and ultimately provide necessary interventions during gestation, would be ideal for all concerned. Historically, ultrasound has been the technology of choice for the identification of sex in utero. However, children with DSD present complex challenges to the specification of sex identity, not only visually on ultrasound, but genetically and hormonally. Due to the complexity and wide differential of DSD, reliable prenatal diagnosis is limited, must be used with caution, and remains a challenge.
Colmant et al note that 3D ultrasound is valuable in the visual identification of ambiguous genitalia prenatally. Emerging technological advances have allowed the identification of genetic mutations and the diagnosis of some forms of DSD during the prenatal course; however, the complexity of the human genome requires further exploration into the causes of DSD and potential medical interventions prenatally.
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Congenital adrenal hyperplasia diagnosed at birth is considered an emergent condition, but early gestational molecular genetic analysis provides prenatal options to parents and to their female fetus, such as the use of dexamethasone administration during the course of the pregnancy, which prevents clitoral enlargement and labial fusion. Prenatal diagnosis of DSD is in its infancy, and more evidence-based studies are needed to diagnose DSD during early fetal development as well as research into medical therapies for treatment during gestation, and comparisons of postnatal and long-term outcomes of the child.
The care of an infant affected by DSD begins with sex assignment. While many aspects of medical management are controversial, there is general agreement that all DSD infants should be assigned a sex as soon as clinical data are available. Surgical intervention may or may not be included in the management of DSD and is one of the most controversial aspects of management. Surgical intervention during infancy has been included in standard DSD management protocols 25 — 27 and only more recently questioned.
Surgical intervention was initially thought to be essential to the successful development of sex identity.
Long-term outcome data on infants who have undergone surgical intervention are extremely limited. Studies highlight both physiological and psychological outcomes. One UK study of DSD females found that women who had undergone early surgical intervention reported higher rates of non-sensuality and inability to orgasm than those who had not undergone surgery.
There are several important caveats to the assessment of long-term outcomes. First, there is a distinct lack of studies comparing the outcomes between individuals of the same underlying DSD condition who did and did not undergo surgery. While complications and unsatisfactory results are reported following genitoplasty, there is also a lack of evidence on the outcomes associated with delaying or avoiding surgery. As Rangecroft explained, there is no evidence to demonstrate the long-term outcomes of rearing a severely virilized female without surgical intervention.
A second limitation of the literature on surgical outcomes is the lack of standardization in the measurement of cosmetic and functional outcomes. Crouch and Creighton point out that most studies of feminizing surgery outcomes focus on appearance and the outcomes are often rated by individuals involved in the original procedure. A vagina with the capacity for penile intercourse might be rated as a good outcome but if the woman experiences pain and lack of sensation during intercourse, she may not perceive this as a satisfactory outcome.
Given the limitations of current data on long-term surgical outcomes, especially in comparison to delayed surgery, it is not surprising that international guidelines and position statements differ in their handling of surgical intervention. The Intersex Society of North America argues that surgery reinforces stigmas against sexual differences, can damage sexual sensation, and may create a sex assignment not concurrent with future sex identity.
Warne and Mann question the capability of parents to consent to surgery when its effects on identity, fertility, and sexual function cannot be known until adulthood. However, most published guidelines and position statements leave room to pursue surgery in infancy and early childhood. The CARES Foundation for CAH does not endorse any specific action regarding surgical intervention but recommends surgery be avoided until the child is medically stable, the parents are fully informed of the risks and benefits, and an expert surgeon is found.
Data regarding mental health indicators among individuals with DSD, such as stress, sex identity, and relationships, present mixed findings. One study of 66 adolescents and adults found that sex dysphoria is uncommon among individuals with DSD. Sex identity and satisfaction with sexual functioning is a core component of the human experience. International efforts have been made to provide ethical principles and guidelines to improve the care of individuals with DSD. Rather, each DSD case must be considered on an individual basis 14 within the context of the diagnosis and the family and cultural setting.
Several authors have offered principles to guide the management of DSD. Some principles focus on outcomes. Other authors describe an ethics-based approach to decision-making in DSD cases. The consensus statement on management of intersex disorders provides a long-term management strategy. All management plans should include: expert evaluation of newborns before sex assignment, total evaluation and management performed by an experienced multidisciplinary team, sex assignment for all individuals, open communication with patients and families, and respect and confidentiality for patient and family concerns.
While a clear hierarchy of principles would seem helpful, Johnston cautions against relying on a single ethical principle in decisions regarding the surgical management of atypical genitalia. While full implementation of these guidelines and principles should be the case for all DSD cases, their implementation is largely limited to the economically developed countries.
Worldwide, poverty is the number one determinant of care received by individuals with DSD. In order for ethics-based DSD management approaches to be implemented in resource-poor areas, diagnostic tools, essential medicines, and specialists must be available. Medical and surgical management for DSD is complex both physically and socially. The continued efforts of the medical community to provide care which is based on medical evidence and ethical principles is essential in promoting positive outcomes for individuals with DSD.
To date, literature suggests several key strategies in promoting ethical care. First, DSD management should be conducted by a multidisciplinary team under the direction of ethics-based guidelines. The importance of the multidisciplinary team is highlighted throughout the DSD literature. Much improvement has already been made in this area. In a survey of 60 DSD centers, Attention to the principle interests of children with DSD may also be promoted through improved communication between health care providers and parents.
Medical advancements allow providers the increased ability to advise parents about sex assignment based on adult outcomes rather than the appearance of genitalia at birth. Sanders et al found that parents wanted clear and complete information and did not want other health care professionals informed without their explicit permission. Additional research should focus on communication aids and strategies to promote parental comprehension and understanding in order to better equip health care providers with this challenging task.
A review of the literature highlights the need for early and continued inclusion of mental health professionals in all DSD cases. The Intersex Society of North America describes the licensed mental health professional as a central member of the multidisciplinary team. Management plans for DSD are particularly challenging in that decisions are made without complete knowledge of future outcomes such as fertility, sexual functioning, and sex identity.
Social, cultural, and religious biases can cloud the judgment of parents and health care professionals even when multidisciplinary teams and ethical guidelines are in place. Warne and Mann argue that providers and parents are too intimately involved to make decisions which are in the best interest of the child. This type of assessment might be carried out by a medical ethicist, a government review board, or a medical team with expertise in the area but not directly involved with the case at hand. The feedback of such a review might also help providers and parents identify considerations they mistakenly overlooked in their decision-making process.
However, the effectiveness of an independent review is limited by the absence of evidence regarding long-term surgical outcomes. Additional research is needed comparing physical and psychological outcomes with and without early surgical intervention. Such information is critical to the ability of all decision-makers to make decisions in the best interest of the child. Finally, care for individuals with DSD must continue to evolve to allow for more successful maintenance of the autonomy of the individual. As described in the Halifax Resolution, the principle of keeping options open for the future recognizes that early decisions made on behalf of the child are not certain and promotes the right of the patient to participate in decision making.
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Increased research on the lived experiences of individuals with DSD and long-term outcomes, both physical and emotional, may also increase the insight of parents and providers regarding the needs and desires of individuals with DSD. Advancements in diagnostic technology and medical care offer the potential improvement of DSD management but cannot substitute for ethical decision-making. Multidisciplinary teams using ethics-based guidelines, improved communication with and education of parents, the early and continued inclusion of mental health professionals, the use of an independent review of treatment plans, and an overarching priority of promoting the autonomy of the affected individual hold the potential for improving the wellbeing of individuals with DSD over their lifetime.
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