Developing a Multidisciplinary Team for Disorders of Sex Development: Planning, Implementation, and Operation Tools for Care Providers

Table 1

Sample team member interview.

Current practices
Please describe your division’s organization. How many people are in the division?
What does rotation and on-call look like? Do you have social workers?
Psychologists/psychiatrists? Departmental coordinator?
Does your division collect data about patient outcomes? What kinds of outcome information does your division or
department collect and track?
What happens in your division when a baby with DSD is born in the hospital (inpatient)?
When and how is your division brought into the case?
What is your division’s role in outpatient DSD case management? How does it differ from your role in inpatient case management?
Vision/goals
Desired team outcomes.
What do you view as a desired short-term (0–6 months) outcome of this team? Where do you see the team 6 months from now?
What do you view as a desired medium-term (6 months–3 years) outcome of this team? Where do you see the team 3 years from now?
What do you view as a desired long-term outcome of this team? What does a completely formed, fully operational team look like to you?
Desired patient outcomes.
What kinds of measurable patient outcomes would you like to see in the short term (within 0–6 months of team implementation)?
What kinds of measurable patient outcomes would you like to see in the medium term (within 6 months–3 years of team implementation)?
What do you view as a desired long-term (patient impact) outcome of this team?
What is it about the way DSDs are managed now that you hope will be changed by this program?
Why is a program like this important?
When a baby is born with DSD (inpatient), what do you think are the most important things to be done:
in the first 24 hours
in the first week
in the first month
When a child with DSD and family first come in (outpatient), what do you think are the most important things to be done:
in the first 24 hours
in the first week
in adolescence (prepuberty)
in adolescence (postpuberty)
during transition to adulthood
What do you want to know from DSD patients (when/if patient feedback is available) and their families who come to this hospital about their experience with the team?
How do you think we should gather this data?
Should this data be used strictly internally, or available for future research purposes?
How do you envision this team operating? For inpatient and outpatient cases, start from the beginning. How should the team be notified? Who does what, and when?
How should we incorporate other providers who are not on the team, but who will be involved in DSD care (such as staff in the delivery room, or attending physicians if a team member is not on site)?
Team functioning
What are the essential ingredients to good team functioning, in your opinion?
What are the essential steps towards forming a functional team, in your opinion?
How often, and under what circumstances, do you envision the team meeting?
Do you envision this team having a leader?
Do you have any specific concerns about, or hopes for, this team’s dynamic?
Values
Disclosure of information to patients.
Do you think that considering disclosure is an important component of care?
What information do you think should be disclosed to patients?
When do you think this information should be disclosed?
How do you think this information should be disclosed?
What parents should know:
What do you think is important for parents to know in order for them to make decisions about their child?
The following are some core concepts of care recommended by the Consensus Statement. Are you comfortable with these concepts of care? Do any of these recommendations seem inappropriate to you? Are there any practice points that you think are missing?
All individuals should receive gender assignment.
Gender assignment should be avoided until a comprehensive evaluation is completed.
Open communication with families is essential and participation in decision making is encouraged.
Emphasis of surgical intervention should be on functional outcome rather than strictly on cosmetic appearance.
Feminizing surgery should only be considered in cases of severe virilization.
Surgical management of DSD should consider options that will maximize the chances of fertility.
The streak gonad in a patient with MGD-raised male should be removed laparoscopically (or by laparotomy) in early childhood. Bilateral gonadectomy is performed in early childhood in females (bilateral streak gonads) with gonadal dysgenesis and
Y-chromosome material. In patients with androgen biosynthetic defects raised female, gonadectomy should be performed before puberty. A scrotal testis in patients with gonadal dysgenesis is at risk for malignancy [4, page e492].
The process of disclosure concerning facts about karyotype, gonadal status, and prospects for future fertility should be a collaborative ongoing action, which requires a flexible, individual-based approach, and should be planned with the parents
from the time of diagnosis.
The following are some key components of the model for shared decision making [10]. Are you comfortable with these concepts?
Establish preferences for information and roles in decision making.
Perceive and address parents’ emotions.
Define concerns and values.
Identify options and present evidence.
Explore parents’ ideas and assumptions, correct misperceptions.
Ensure parental understanding.
Share responsibility for making a decision.
Perceptions
What do you view to be the strengths of, and assets to, this team?
What do you view to be the potential challenges to team formation and operation?
What is your main reason for participation on this team?
What do you care about most when it comes to care for these families?