Date: June 2022
Prepared by SIC Member: Ece Bayram, MD, PhD
Authors: Indira Subramanian, MD; Wissam Deeb, MD; Jason D. Flatt, PhD, MPH
Editor: Lorraine Kalia, MD, PhD
Human research studies usually report “sex” or “gender”, but there is often misuse of these terms. Although sex, gender and gender identity interact with one another, they each have different definitions. “Sex” refers to the biological and physiological differences of females, males and intersex persons, including chromosomes, hormones and reproductive organs; “gender” refers to socially constructed norms, behaviors and roles occurring in a cultural and historical context which can vary across societies and over time; “gender identity” refers to the person’s individual sense of their gender, which may or may not correspond to their designated sex at birth or physiology (1,2). We are only beginning to understand how prevalence, progression and treatment response of various movement disorders may be influenced by sex and gender. Here we share the insights of Drs. Subramanian, Deeb and Flatt who are currently leading efforts to advance our field in this area.
1. Why does considering sex and gender matter for movement disorders patients?
We don’t know a lot about sex and gender differences in movement disorders. The majority of studies have measures of sex in terms of the binary (male vs. female) and some studies might call their measure ”gender”, but often the measure only captures binary sex. We know very little about movement disorders in sexual and gender minorities. Moreover, we don’t know enough about movement disorders in cisgender (not transgender) women. Several reviews have suggested there are differences in the progression and symptomatology of movement disorders by biological sex (male vs. female). However, we need more research to explore how biological sex differences may be contributing to movement disorders, including differences in cognitive, functional, biomarker, and treatment outcomes. We know almost nothing about intersex (people born with differences in sex development), transgender and gender diverse people as well as sexual minorities, or LGBTQIA+ people more broadly. We also need to reduce barriers to engagement and participation in movement disorders research and disparities in access to care.
Currently, we do not know much about the interaction of sex and gender on movement disorders, but there are possible indicators of such an interaction warranting further studies; for example, the effect of age/menopause on the incidence of Parkinson’s disease among the sex binary, or the higher prevalence of tic disorders in boys compared to girls (3). Similarly, interactions of sex and gender with phenomenology, progression, disease burden and cognitive profile are possible and need to be evaluated. Most of the available studies, when collecting sex/gender, are evaluating a binary assessment of maleness versus femaleness, thus erasing the possible effects of sex and gender diversity on movement disorders patients.
There are many gaps in knowledge in the effects of sex and gender in cisgender women as described in our paper (4). Estrogen seems to have an effect on inflammation, cell death and alpha-synuclein deposition. The hormonal cycles of women including menstruation, pregnancy, perimenopause and post menopausal time frames can affect symptoms of Parkinson’s disease. Additionally, there are many psychosocial differences including roles that are played by cisgender women, including caregiving roles that can impact how they live with Parkinson’s disease and the care that they seek.
2. What do you think is causing these differences across the sexes and genders?
In women living with Parkinson’s disease, some differences can be accounted for by hormones such as estrogen, differences in social support and roles played in their lives. There may also be some contribution to more dyskinesias seen in women due to lower body mass index and differences in drug metabolism. There are also genetic factors that contribute to these differences. More research needs to be done in this area.
I don’t think we can adequately say much about the etiology given the lack of movement disorders research that addresses gaps in our knowledge of differences related to sex, gender identity and sexual orientation. Factors such as gender roles, norms or behaviors likely play a role in many of the potential causal pathways. The short answer is we need more research.
The etiology(ies) of the differences observed among the sexes in movement disorder patients remains unknown, thus supporting the importance of considering sex and gender in clinical and research work in movement disorders.
3. How can we support sexual and gender minorities as healthcare professionals beyond research?
In our movement disorders and neurology clinics, we can support our sexual and gender minority patients in multiple ways. We need to work on implementing a culture of respect and inclusion. This effort entails advocating within the institution/workplace to ensure non-discrimination policies protect sexual and gender minorities. In addition to having the policies, we need to develop locale-adaptive strategies to implement them and create an atmosphere in which sexual and gender minorities feel represented, respected and safe. There are published guidelines to which a person can refer to help this effort, such as “providing inclusive services and care for LGBT people – a guide for health care staff” by the Fenway Institute (5) or the “Organizational Strategies and Inclusive Language to Build Culturally Responsive Health Care Environments for Lesbian, Gay, Bisexual, Transgender, and Queer People”(6). These policies focus on education about sexual and gender diversity, avoiding assumptions in interactions and communication (verbal, non-verbal and written), practicing a more inclusive communication style and creating an atmosphere of accountability to these values. A diverse workforce best reflects the inclusivity and celebration of diversity in a clinic. Many sexual and gender minority movement disorders patients use the diversity in staff as a barometer for the clinic’s culture. Staff can also show their allyship to sexual and gender minorities non-verbally by adding their pronouns and the pride flag to their name badge.
To provide this more inclusive and respectful care, we need to know our sexual and gender minority patients. Updating the clinical collection forms to include more comprehensive options is crucial in this effort. It is critical to collect this information sensitively, privately and voluntarily. People should have the opportunity to skip those questions or answer “I don’t know” or “prefer not to answer.” If the electronic medical record allows collecting these data from a person’s home (through their portal), then this is usually recommended.
Finally, interested staff can create or join a task force to assess these aspects and determine the best strategies to implement and improve the care for sexual and gender minority patients. These local task forces are crucial in adapting the general national guidelines to the local resources, limitations and culture.
We need to increase the pipeline of minorities going into fields such as movement disorders. We need to hire diverse staff and making them feel more comfortable being who they are. Patients feel more comfortable getting care and are more likely to comply with care that is administered by someone who looks like them.
I think a focus on the culture at one’s institution is often a good place to start. First, how do you make sure sexual and gender minorities are included in the research? Do you include questions on surveys or intake forms that ask about sex, gender and sexual orientation? I encourage readers to check out the recent report from the National Academies that provides recommendations to the NIH on “Measuring Sex, Gender Identity, and Sexual Orientation” (7). Do you hire people who identify as sexual and gender minorities as well as people from diverse backgrounds? Do you have institutional policies the prevent discrimination against sexual and gender minorities? Some of these small steps can help to make a culture shift in healthcare environments, and these ultimately will help to ensure that programs and services are designed for all people.
- National Institutes of Health. Sex & Gender | Office of Research on Women’s Health. 2021. Available from: https://orwh.od.nih.gov/sex-gender
- World Health Organization. Gender and health. Available from: https://www.who.int/health-topics/gender
- Roy Lin CY, Rosendale N, Deeb W. Expanding sexual and gender minority research in movement disorders: More than awareness and acceptance. Parkinsonism Relat Disord. 2021 Jun 1;87:162–5.
- Subramanian I, Mathur S, Oosterbaan A, Flanagan R, Keener AM, Moro E. Unmet Needs of Women Living with Parkinson’s Disease: Gaps and Controversies. Mov Disord. 2022 Mar;37(3):444-455.
- National LGBT Health Education Center. Providing Welcoming Services and Care for LGBT People: A learning guide for Health Care Staff. 2015. Available from: https://www.lgbtqiahealtheducation.org/wp-content/uploads/Providing-Inclusive-Services-and-Care-for-LGBT-People.pdf
- Goldhammer H, Smart AC, Kissock LA, Keuroghlian AS. Organizational strategies and inclusive language to build culturally responsive health care environments for lesbian, gay, bisexual, transgender, and queer people. J Health Care Poor Underserved. 2021;32(1):18–29.
- Committee on Measuring Sex, Gender Identity, and Sexual Orientation. Measuring Sex, Gender Identity, and Sexual Orientation. Editors Bates N, Chin M, Becker T. National Academies Press; 2022. Available from: https://nap.nationalacademies.org/read/26424/chapter/1