Obstacles in transgender healthcare

When the two co-medical directors of the Lesbian, Gay, Bisexual, Transgender, Queer, and Questioning (LGBTQ) Clinic at the University of Iowa Hospitals and Clinics delivered a Grand Round presentation for the Department of Pathology, it was eye-opening for many of our pathology staff who were unaware of terminology and many of the issues presented. This is not surprising given that many of the technologists, nurses, physicians, and other staff in our department likely received little or no formal training in LGBTQ health-related issues.

The last several years have seen increased visibility of transgender individuals in the media in United States. While this has served to increase attention on some issues related to the transgender population, what often gets overlooked is that the transgender population remains one of the most underserved groups in the country. Standards of care for the transgender population, recently published by the World Professional Association for Transgender Health, is a step in the right direction but more concerted efforts are required to achieve the highest standards of care in the future.

There are a variety of pathology-related issues with regard to transgender patients. Some of these issues are technical in nature such as interpretation of Pap smears in transmasculine persons who are receiving testosterone therapy. Others are wider issues that affect the entire healthcare community. A good example is whether patient-preferred names are displayed in the electronic medical records in addition to the legal name.

At a broad level, one of the most fundamental challenges in healthcare with regard to the transgender population is that much of medicine and the medical record is structured around sex. Electronic medical records display sex as one of the basic patient identifiers in addition to name, medical record number, and date of birth. In most electronic medical records, the sex field usually only allows two choices – Male/Female – or sometimes a third option such as “Unknown” for rare situations such as severe burns where the patient identity may not be readily apparent. Clinics may bear designations such as “Women’s Care” or “Men’s Health”.

At a more detailed level, the interpretation of many laboratory tests utilize reference or normal ranges that are sex-specific. This includes some of the most frequently ordered tests such as complete blood count, lipids, liver function tests, and hormone assays. Calculations or algorithms often use equations incorporating sex as a variable that allow for interpretation of laboratory tests. The most common example would be estimated kidney function using calculated glomerular filtration rate (GFR). However, there has been very little investigation into reference or normal ranges for laboratory tests for transgender patients. In some regards, this is similar to the situation that existed years ago in pediatrics. Many laboratory tests did not have detailed pediatric ranges (especially in very young children) until researchers put in the effort, sometimes with external funding, to conduct detailed reference range studies in children. This has now allowed for very detailed age and sex pediatric normal ranges. A similar effort will be needed for transgender patients. This will likely be challenging because even within the transgender population, there are a range of transitioning options including various hormonal therapies and surgical procedures that affect laboratory test results.

Sex also determines a range of decisions and criteria in medicine. Within pathology, this is probably most evident in transfusion medicine. Eligibility criteria for blood donors are separate for men and women. Potential risk of receiving blood products may also differ based on sex. Current regulations often don’t address where transgender individuals fit in these regulations.

Lastly, although much of pathology operates “behind the scenes” from the patient perspective, some areas such as phlebotomy, blood bank, and cytopathology interact face-to-face with patients. In this regard, the ability to know the patient’s preferred name and gender becomes quite important in providing the best customer service. Our own institution is currently engaged in an effort to allow the electronic medical record to show the patient’s preferred name in addition to legal name. One of the main drivers for this effort was to provide more welcoming care for transgender patients.

This seemingly simple change has been surprisingly complicated in that patient name is used so ubiquitously throughout the electronic medical record. There are some instances when preferred name is appropriate (e.g., when calling patients from the waiting room) but other cases (e.g., billing to insurance) where it may not be suitable. We have also found that while our institution’s electronic medical record can accommodate preferred name, many of the various other computer systems that interact with the electronic medical record cannot. Examples include various software within pathology and radiology that transmit patient data to the electronic medical record. Further, in some situations, existing regulations require patient’s full legal name and preferred name is not acceptable. An example would be in the administration of blood products where careful match of patient identity is essential to avoid infusion of the wrong product. Overcoming these practical challenges takes time but delivers a very inclusive message the patients.

Featured image credit: Medical record health patient form by vjohns1580. CC0 Public Domain via Pixabay.