We developed a network people from many backgrounds who worked together to create a list of research priorities focused on genital gender-affirming surgery (GGAS). Our objectives:
1) Gather stakeholders from across the country who will represent patient, community, advocacy, healthcare, payer, and other backgrounds (TRANS-ARC).
2) Through surveys and discussion groups, we will gather themes and research questions about GGAS that are important to a wide community, and create a list of Prioritized Research Topics.
3) Host a TRANS-ARC Summit (March 12-13, 2021), including educational content on patient-centered outcomes research (PCOR) in GGAS and breakout discussions.
Since the Summit, we have been sharing results widely with trans/non-binary and research communities.
Read our TRANS-ARC PCORI project summary.
What are some research questions we have about genital gender-affirming surgery?
Does using information and support from peers online make planning or recovering from surgery easier?
- Gaines Blasdel
How can clinical teams approach pre- surgical education and care coordination for individuals seeking gender affirming surgery so they are best prepared for post-operative recovery?
- Amy Penkin, LCSW
What is the impact of pre- and post-op pelvic physical therapy on post op sexual and urinary symptoms in transgender women undergoing vaginoplasty?
- Maddie Deutsch, MD, MPH
Does peer-delivered pre- and post-surgical support and care navigation improve surgical outcomes?
- Jae Sevelius, PhD
How does stopping vs. continuing estrogen prior to vaginoplasty impact post-operative venous thromboembolism rates and quality of life?
- Geolani Dy, MD
How do various characteristics known to impact health outcomes more broadly (race, education, insurance coverage, income-level, immigration status, age etc.) influence the quality of care provided and the outcomes of gender affirming surgeries?
- Sachiko Ragosta
What are your questions about genital gender-affirming surgery?
What is CER?
Comparative effectiveness research (CER) is a way to identify best practices to create more efficient and effective health care.
Criteria of CER:
a. Compare 2 or more alternative tests, procedures, therapies, methods to see which is better
b. Be conducted in a "real world" setting. Most research happens in a lab, under highly controlled settings. This makes it hard to translate outside the lab. CER makes it easier to start improving health care with better information sooner.
The goal of CER is to provide evidence for patients, physicians, caregivers, and policy makers to make informed decisions that ultimately improve care and patient outcomes.
What is PCOR?
Patient-Centered Outcomes Research (PCOR) helps people and their caregivers communicate and make informed health care decisions. This type of research is unique, as it adds in the patient and community voice when assessing the value of health care options.
This research answers questions such as:
a. “Given my personal characteristics, conditions and preferences, what should I expect will happen to me?”
b. “What are my options and what are the potential benefits and harms of those options?”
c. “What can I do to improve the outcomes that are most important to me?”
d. “How can clinicians and the health care system help me make the best decisions about my health and healthcare?”
To answer these questions, PCOR:
Looks at the benefits and harms of all types of healthcare to inform decision-making.
Focuses on outcomes that patients notice and care about most. These might include: physical or sexual function, severity of symptoms, mental health, satisfaction.
Takes place in a wide variety of settings, with people from many different backgrounds and experiences.
Identifies barriers to spreading best practices within the health care system.
- Looks at how to obtain best possible outcomes while addressing burden to individual people, availability of healthcare services, technology, and personnel, and perspectives of all the individuals involved in healthcare.