AIC assesses top clinical priorities for Intersex and people with DSD
AIC has an opportunity to offer input and consult on research affecting children with intersex conditions or DSD funded by the National Institutes of Health (NIH). We asked for help from you, our AIC constituents, to identify a list of 5 top priorities for clinical care of people with intersex conditions/DSD.
Beginning a conversation about changes needed in clinical care, a large undertaking, we shared a survey and received responses from an amazing one hundred thirty-four individuals. The survey allowed participants to rank clinical care priorities and provided space to share their own priorities and suggestions. We have shared all of this information with the researchers who asked for it, and it has been shared with a number of other hospitals as well. If you didn’t get a chance to participate in the survey (the link is no longer active) AIC will continue to seek opportunities for guidance and input from our community as we move forward.
Top Priorities
134 individual people responded: (Note: people could check more than one category) and identified themselves as members of the following respondent categories:
Participants were given the chance to select their top five choices. The priorities that emerged on top are: eliminate unnecessary genital/gonadal surgery (112 responses 83%), offer families strategies or support for delaying gender assignment until child can participate in the decision (78 responses 58%), increased psychosocial support for patients and families (75 responses 56%), increased children’s opportunities to participate in decisions about their care (74 responses 55%) and increased patient and family access to support groups (56 responses 41%).
Survey data and initial observations
We observed that each respondent category (as a group) selected “Eliminate unnecessary genital surgery” as the number one priority. Every respondent category also included “Increase psychological support to patients & families” within their Top 5 ranking. “Increase children’s opportunities for participation in decision making” made Top 5 for every respondent category except Medical Professionals. All respondent categories except Partners selected “Offer strategies for delaying gender assignment” within their Top 5.
Intersex Adults and Parents also selected “Increase access to support groups” in their Top 5, but Professionals did not. It was also noted that for Parents there was a 4-way tie between: Access to Support Groups, Improved Informed Consent, Improved Accuracy of Assignment, and Development of One Stop Shop Clinics for the fifth spot of their Top 5.
| Priority |
Responses |
|
| Eliminate unnecessary genital/gonadal surgery |
112 |
83.58% |
| Offer families strategies or support for delaying gender assignment until child can participate in the decision |
78 |
58.21% |
| Increase psychosocial support for patients and families |
75 |
55.97% |
| Increase children’s opportunities to participate in decisions about their care |
74 |
55.22% |
| Increase patient and family access to support groups |
56 |
41.79% |
| Eliminate unnecessary genital exams and photography |
50 |
37.31% |
| Increase focus on providing a continuum of care over the patient’s lifetime |
40 |
29.85% |
| Decrease use of sex hormones that are undesired by the patient |
37 |
27.61% |
| Improve informed consent process for parents making decisions about gender assignment or genital surgery |
36 |
26.87% |
| Develop multidisciplinary “one-stop-shop” clinics |
30 |
22.39% |
| Decrease or eliminate use of stigmatizing language |
27 |
20.15% |
| Improve accuracy of initial gender assignment |
24 |
17.91% |
| Improve quality of genital surgery |
10 |
7.46% |
| Improve accuracy and speed of diagnosis |
10 |
7.46% |
| Total Respondents: 134 |
