Duke Project Narrows Top Research Priorities for, and by, Women with ADHD

According to a new survey, women with ADHD would prioritize research across the lifespan on four key topics: the role of hormones in ADHD, cognitive decline in post-menopausal women with ADHD, the unique harms of late or incorrect diagnosis, and executive function challenges among girls and women with ADHD.

By Anni Layne Rodgers Verified Updated on May 24, 2024

May 24, 2024

The most urgent and important areas of medical research on women with ADHD include the following:

Hormonal Influences: Understanding how hormones impact ADHD presentation and treatment in girls and women
Aging and Cognitive Decline: Investigating the connection between aging, cognitive decline, and ADHD in post-menopausal women with ADHD
Misdiagnosis and Late Diagnosis: Exploring the unique harms of misdiagnosis or later-in-life diagnosis of ADHD in women
Executive Function Challenges: Studying how executive functioning challenges (e.g., organization, prioritizing, time management) manifest in girls and women with ADHD

These research priorities emerged from the interim results of a survey conducted by the Duke Center for Girls & Women with ADHD last month. The online survey asked respondents to rank 46 unique health research according to their personal importance, revealing broad consensus among women of various ages and socioeconomic backgrounds. To date, 1,350 people have completed the survey.

For women with ADHD in their 20s, 30s, and 40s, the top research priority was understanding the role of hormones in ADHD symptoms and treatment. Women aged 51 and older prioritized research on the interplay between ADHD, aging, and cognitive decline after menopause.

These findings complement those of ADDitude’s recent survey of 705 women with self-reported ADHD, 69% of whom said their quality of life would be most significantly impacted by research on “how the hormonal changes of perimenopause and menopause affect ADHD symptoms.” The survey respondents also expressed frustration by the historical lack of recognition of ADHD in women and girls.

“Surely I’m not seeing something that the actual scientists can’t,” wrote one ADDitude reader in response to an Instagram post calling for greater research on hormones and ADHD. “We know that dopamine levels are directly correlated with estrogen levels. It seems obvious that the Estrogen Rollercoaster we live on would have a huge impact on our symptoms, no?”

Among post-menopausal women who completed the Duke Center’s survey, their research priorities shifted to also include studies on the psychological, emotional, and long-term health implications of late diagnosis, including:

The impact of ADHD on girls’ and women’s beliefs about themselves
Specific considerations for therapy for women who were diagnosed with ADHD later in life

“I was an older woman (60+) when I realized that ADHD is real and that I have it,” wrote one respondent to ADDitude’s survey on research priorities. “I have lived with the misleading belief that I was a loser, lazy, incompetent… What are the long-term impacts of these self-defeating beliefs? Where does one this old go for help this late in life?”

Another woman lamented clinicians’ failure to understand, diagnose, and treat women for ADHD. “Most people going through menopause have not been allowed to have ADHD according to the DSM,” the woman said in response to an Instagram post calling for greater research on menopause in women with ADHD. “When we were kids, we had to be male and physically hyperactive [to get an ADHD diagnosis]. Born female before the late ‘80s, you had to be a sodding unicorn to be diagnosed. Seeing as we’ve only been in the club for a few years, why would anyone think to have looked?”

Quantifying ADHD Research Needs

Of the 1,350 survey responses included in the Duke Center’s early results, 1,128 came from adult women who self-identified as living with ADHD. The majority of these women were White, lived in mostly urban or suburban regions, and reported that they did not experience significant financial hardship. A third of the sample were of “childbearing age” (i.e., ages 24-40), more than half were in their 40s and 50s, and 37% were 60 and older. A small minority (2%) were “young adult” women (ages 18-23).

The majority (N=429, 38%) of the sample identified as not yet starting menopause, 35% (N=392) were perimenopausal or in menopause, and 285 respondents (25%) identified as being post-menopausal.

Research Priorities for Girls with ADHD

More than 400 survey respondents identified as being a parent of a daughter with ADHD. The Duke Center used their responses as a proxy for the top child-specific research priorities for girls with ADHD, which included the following:

Investigating the reasons why girls with ADHD experience heightened rejection sensitivity
Exploring how teachers’ understanding of ADHD presentation in girls can be different from boys, and how this unique presentation impacts identifying and supporting girls with ADHD in school
Understanding the impact of social development delays in girls with ADHD
Studying the challenges of identifying, supporting, and advocating for girls with ADHD in education settings
Researching effective learning environments, teaching approaches/school accommodation, and strategies for girls with ADHD

Other Notable Findings

Women in their 20s and 30s were the only respondents to rank “unique medication concerns for girls and women with ADHD” as one of their top priorities. They also identified “workplace accommodations and strategies that are most helpful for women with ADHD” as especially important, a theme that was not prioritized as highly by other groups.

Post-menopausal women were in the only group to rank “impact of ADHD on girls’ and women’s beliefs about themselves” as one of their top four priorities.

Given that 90% of the sample of adult women with ADHD identified as White, and 95% identified as non-Hispanic, the researchers were unable to examine whether different races or ethnicities prioritized themes differently. Additional recruitment of more diverse groups is under way.

Research by the Duke Center for Girls & Women with ADHD is supported by a Patient-Centered Outcomes Research Institute (PCORI) Engagement Award (EASCS-26478), which aims to learn from girls and women living with ADHD — as well as from the people who love and support them — about the research areas that are the most important to them. The center’s mission is to advance education about the unique needs of girls and women with ADHD across the lifespan.