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  If you didn’t get a chance to participate in the survey (the link is no longer active) AIC will continue to seek opportunities for guidance and input from our community as we move forward.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:


AIC responses graph

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%).


Top 5 Graph by respondent category

 

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