Spotlight Case

1. Spotlight Case It's Sarah, not Stephen!

2. Source and Credits • This presentation is based on the October 2013 AHRQ WebM&M Spotlight Case • See the full article at http://webmm.ahrq.gov • CME credit is available • Commentary by: UrmimalaSarkar, MD, MPH, University of California at San Francisco • Editor, AHRQ WebM&M: Robert Wachter, MD • Spotlight Editor: John Q. Young, MD, MPP • Managing Editor: Erin Hartman, MS

3. Objectives At the conclusion of this educational activity, participants should be able to: • Define and distinguish the terms gender identity, gender expression, and gender variance • Delineate patient safety issues associated with transgender health • Appreciate the challenges that transgender patients who are transitioning experience • Describe how registration and clinic processes can be modified to ensure that transgender patients are treated with respect and compassion

4. Case: Gender Variance (1) An 8-year-old child, born male who identified as and expressed externally (e.g., clothing, haircut, behavior) as a girl, presented for a new patient appointment. The patient's mother, aware that her child's preferred name was not consistent with her legal name and sex, had alerted the clinic of the child's preferred name at the time of making the appointment. When the patient and her mother arrived for the clinic visit, the medical staff was unaware of the registration documentation regarding the patient's preferred name and called for the patient in the waiting room using her legal (masculine) name.

5. Background Gender identity: a person's private sense of one's own gender Gender expression: refers to how a person expresses one's gender identity—it is illustrated through one's external characteristics and behaviors Gender variance: when gender expression does not conform to dominant gender norms of male and female

6. Background (2) • Gender Identity Disorder (GID) or Gender Dysphoria: • Formal terms used to describe individuals who experience discontent with the sex they were assigned at birth and/or the gender roles associated with that sex • Medical condition • Transgender: term often used to describe affected individuals • Transitioning: refers to process of using hormonal and/or surgical treatment to align preferred gender with appearance

7. Epidemiology • We lack precise estimates for incidence of gender variance, for several reasons • No routine surveillance of gender minorities in United States • Transgender individuals often do not disclose their gender identity because of stigma and risk of harassment • Estimates • National Center for Transgender Equality estimates between 0.25% to 1% of population is transgender • Recent study drawing from population-based surveys suggests there are nearly 700,000 transgender individuals in US • Classic estimate for prevalence of GID from 1994 DSM-IV, which reported 1:30,000 natal males and 1:100,000 natal females as transgender

8. Case: Gender Variance (2) The mother and child felt embarrassed and humiliated by this course of events. Both were visibly upset and the provider had to spend additional time during the clinical visit addressing the emotional impact of inappropriately calling this patient a masculine name. The clinic staff had received prior training in addressing transgender and gender-variant people by their preferred names but had not developed communication processes to best convey this information.

9. Case: Gender Variance (3) The clinician acknowledged the error when it occurred, apologized for the harm done, and reassured both mother and child that it was not the intention of the clinic to have the child feel her identity was questioned or undermined. The provider suggested that the parent contact the ombudsperson's office directly to comment specifically on what was done well at that visit and what specific behaviors could be improved in the future care of her child. The patient's mother did just that.

10. Reflections on this Case • Common experience—transgender patients report acute discomfort when addressed according to a gender that is discordant with their self-identity • Incorrect name/pronoun use in health care settings: • Patients report lower satisfaction • Patients less likely to continue to seek care at that setting

11. Patient Safety Concerns: Discrimination • Increased rates of discrimination, violence, and harassment for transgender patients • One in five transgender people in US have been refused a home, and more than one in ten have been evicted because of their gender identity • A national survey found that of those who presented identification that did not match their gender identity in health care settings: • 40% reported being harassed • 3% reported being attacked or assaulted • 15% reported being asked to leave

12. Patient Safety Concerns: Access Survey studies report: • Transgender patients postpone medical care due to discrimination or inability to pay • Transgender patients report refusal of care and harassment in medical settings • The majority of US health insurers do not cover hormone replacement therapy or sexual reassignment services

13. Health System Barriers Problems with identification forms (e.g., driver's license or health insurance card) that indicate assigned rather than preferred gender Lack of a systematic approach by hospitals and clinics to collect current gender and preferred pronoun Limited access to gender-neutral bathrooms

14. Patient Safety Concerns: Health Risks • Transgender populations among groups at highest risk for HIV infection • In 2009, rate of newly identified HIV infection was 2.6% among transgender persons, compared with 0.9% for males and 0.3% for females • Higher rates of drug use, homelessness, depression, and suicide among transgender populations • A survey of San Francisco youth found that one-third of transgender youth have attempted suicide • A recent national report found that 41% of transgender adults have attempted suicide

15. Patient Safety Concerns: Transitioning • Non-prescribed hormone use among transgender population widespread throughout US • Prevalence ranges from 30% to 71% • Non-prescribed hormone users may be at increased risk for health problems resulting from improper dosing and a lack of monitoring • Adverse effects include hormone-related cancers, increased weight, decreased insulin sensitivity, poor lipid profile, and elevated hematocrit levels, raising concerns for cardiac and thromboembolic events

16. Principles and Practices for Safe Care Compassion and respect for the patient's expressed gender identity Clinician training in transgender and gender-variant health issues

17. Best Practice Recommendations Patients should be able to identify sex at birth, current gender identity, and preferred gender pronoun separately during health care intake To address patients respectfully and in accordance with their wishes, staff training and clear communication across different providers and sites within a health system are important If a patient's gender is unclear, using gender-neutral phrasing such as "your next patient is here" is a recommended strategy Allowing individuals to use the bathroom of gender with which they identify is also recommended

18. Electronic Health Record • Recommended features for EHRs: • Include preferred name, gender identity, and pronoun preference as structured demographic variables • Include an inventory of a patient's medical transition history and current anatomy • Allow smooth transition from one listed name, anatomical inventory, and/or sex to another, without affecting the integrity of the remainder of the patient's record • Alert providers and clinic staff of patient's preferred name and/or pronoun

19. Prevention Screening • Patients who have not undergone gender-affirmative surgeries or used hormonal therapy: • Screen according to the guidelines established for their birth sex • Patients who have undergone surgery or hormonal treatments: • Screening recommendations must be modified • UCSF Center of Excellence for Transgender Health's Web sitehas helpful information

20. Take-Home Points Transgender identity is a medical condition, not a person's choice, and care should focus on the patient's wishes. Health care teams should be trained to interact with transgender individuals in a courteous and patient-centered manner. Registration and intake processes should capture information about general preference, and systems should be in place (including through EHR) to ensure this information is available to all providers and is used in the patient's care. Providers should pay particular attention to prevention screening in transgender patients.