The following represent a checklist of Quality Care Indicators for the care of children with Differences of Sex Development (DSD)*. This list is designed to provide pediatric DSD teams and parents with a short-form summary of the management strategies articulated in recent consensus documents, including the 2006 “Chicago Consensus” of the Pediatric Endocrine Society and the European Society for Pediatric Endocrinology (available here), and the Clinical Guidelines available at dsdguidelines.org.
This checklist of Quality Care Indicators has been assembled by Claire Sorenson, RN BSN, Rush University Medical Center (Chicago). Healthcare professionals, patients, and support groups are invited to employ this checklist, but are asked to include with any printed copy the following citation: Excerpted from Claire Sorenson, “Quality Care Indicators for the Pediatric Management of Disorders of Sex Development,” submitted for publication, © Claire Sorenson, 2011. Republication on the Web, in print, or in other media requires the written permission of the author. (This list is reproduced here with the author’s permission.)
Quality Care Indicator Checklist
Interdisciplinary Team
Teams should be comprised of specific, named members of the following disciplines. Members should be held accountable for attendance at care-team meetings; attendance goal should be 75% of identified team present for general meetings and 100% for any meeting including a consent process. Team should hold regularly scheduled meetings to discuss DSD cases and have protocols in place for scheduling meetings for case management
- Child psychologist or child psychiatrist with experience in DSD and gender issues
- Geneticist
- Genetic counselor
- Pediatric/adolescent gynecologist
- Nurse representative (while many nurses may be involved in the child’s care, this nurse will serve as spokesperson for the nursing team)
- Pediatric endocrinologist
- Pediatric urologist
- Social worker
- Pediatrician/Primary care provider (may be specific to the family)
- Child life specialist (may be one of the above)
- Ethicist
- Medical interpreter (as needed)
- Designated liaison to communicate with family (will typically be one of the above individuals)
- Designated support group liaison (if possible this person will have personal history of DSD or a child with DSD in order to offer peer support)
Staff Education
The team will have in place provision for the following types of education:
- Baseline workshop on standards of care for all members of team
- CEUs as appropriate by discipline for members of team
- Quarterly in-services for members of team
- Case studies of various DSD diagnoses and management (could be review of past cases or other published cases)
- Periodic review of DSD Guidelines
- Talking points for labor and delivery staff available for when child with ambiguous genitalia is delivered
Community Education
The team will also have in place provision for the following types of educational outreach:
- Annual educational opportunities (workshops, CEUs) for community healthcare providers
- Consultation and assistance to other hospitals/clinics unfamiliar with DSD management
DSD Management
When dealing with particular cases of DSD in children in their care, the team will:
- Follow “Chicago Consensus” of PES/ESPE and DSD Guidelines
- Have a uniform care-plan in place, specifically one that can be individualized
- Care-plan will include (but not be limited to)
- Initial assessments
- Lab work [to be] completed
- Appointments with liaison and specialists
- Psychosocial needs assessment
- Documentation of care conferences, meetings, follow-ups
- Have a follow-up program in place
- Follow-up phone calls from liaison at designated time-points
- Referrals for psychological, medical, and surgical services when necessary
- Provide access to appropriate support groups
- Liaison has active contacts for reputable local, national, online support groups
- Parents receiving prenatal diagnoses are given direct access to these resources
- Families receiving diagnosis in infancy, childhood, adolescence, adulthood are given access to these resources
- Minimize genital exams and photography
- Track long-term outcomes through internal record-keeping
- Track long-term outcomes via participation in national/international registries
Provision for Informed Consent
Informed consent processes aim to ensure that families are fully educated about the known risks, benefits, and costs of each option available to them. Therefore:
- Consent for any surgical and medical (including hormonal) interventions should include
- Discussion of evidence of medical necessity or lack thereof
- Risks/benefits including potential effects on
- Fertility
- Sexual function and sensation
- Mental health, including sense of well-being
- Continence
- Other functions
- Consequences of removal of tissue
- Potential complications
- Discussion of implications for gender assignment
- Legal consult if there is potential for loss of fertility or loss of potential fertility
- “Think period” should be instated prior to signing consent
- All team members should be available during consent discussions and “think periods” to answer questions