Grant Recipient Uses Mobile Device Observation in Sickle Cell Pain Study

Technology takes center stage in a new epidemiologic study of acute vaso-occlusive pain associated with menstruation in women with sickle cell disease (SCD). Deva Sharma, MD – who completed her hematology-oncology fellowship at Vanderbilt University School of Medicine and is currently a transfusion medicine fellow at Vanderbilt University Medical Center – is spearheading an initiative to understand the biology behind the severe, debilitating pain experienced by women with sickle cell disease during menstruation.

And she’s doing it in real-time with a little help from the iPod Touch!

“We began with clinical observation,” Dr. Sharma explains. “We’ve observed that adolescent and adult women with SCD are admitted to the hospital more frequently during their menstrual cycles. Menstruation is causing them to have more pain, and we want to understand why this happens.” To do this, Sharma asks her study participants to log their menstrual symptoms even when they’re not at the hospital during treatment or examination.

Sharma is a 2017 recipient of the Foundation for Women & Girls with Blood Disorders Research Fellowship Award “Promoting XXcellence in Women’s Health: Optimal Management of Women and Girls with Blood Disorders.” According to her project’s written overview: “To our knowledge, we are the first group to provide prospective and quantitative data showing that acute vaso-occlusive pain associated with menstruation is a real clinical phenomenon in women with SCD that is phenotypically distinct from primary dysmenorrhea.”

According to Sharma, this observation is in fact decades old. She explains that her mentor Dr. Michael R. DeBaun – Vice Chair for Clinical Research, JC Peterson Endowed Chair, Professor of Pediatrics and Medicine at the Department of Pediatrics, Division of Hematology-Oncology Vanderbilt University Medical Center – observed this pain occurrence in women with SCD years ago but has been largely eschewed. “When you hear it’s been ignored for decades, that really motivates you to pursue the question,” Sharma says.

“We are thrilled that Dr. Sharma has undertaken a rigorous approach to understanding why acute sickle cell pain is associated with the onset of menstruation in a subset of women,” Dr. DeBaun explains. “Ultimately, understanding this mechanism may lead to sex-specific therapies that will prevent or attenuate acute pain episodes.”

Vanderbilt University School of Medicine student Melissa Day, along with Sharma, administered 74 face-to-face surveys to female patients with SCD. The resulting data showed that 42 of these patients (56.7%) identified menstruation as a trigger of acute pain, and 20 of those 42 reported experiencing pain triggered by menstruation in the absence of dysmenorrhea.

In other words, even when these women do not undergo the common discomfort associated with premenstrual syndrome and menstruation – such as cramps, backache, headache and more, they are still experiencing an uptick in the debilitating pain episodes experienced by individuals with SCD when they get their period each month. “Does this occur sometimes, does this occur often?” Sharma contemplates aloud, subsequently concluding that she estimates a high degree of relevance for women with SCD in their childbearing years.

“We’ve initiated a trial that includes about 40 participants,” Sharma explains. “We worked with collaborators at the University of Pittsburgh to develop a mobile application for the iPod Touch, which will collect daily information about pain and menstruation from participants.

“Our participants were VERY happy to receive an iPod,” she adds. The ample benefit for this project’s team in accurately observing symptoms is very real: “Every step provided the rationale for the next step,” Sharma says. “The affirmation we got from the focus group provided a rationale to study this in real-time using the mobile app.”

Thus, with a little help from our foundation grant and the technology of Apple Inc., Sharma may just uncover the cause of increased vaso-occlusive pain associated with menstruation. “This pain,” she explains, “is adversely affecting these women’s abilities to have successful relationships and even hold down decent jobs. We saw this as an opportunity to bring light to a significant problem; and one that affects black women disproportionately.

“I was drawn to hematology by excellent mentors who took the time to go through patient files, visit the patients and talk to them,” she adds. “As much as I like the science, as a clinician, I am equally fascinated by patient stories.”

From her home base in Tennessee, Dr. Sharma meets with sickle cell disease patients from all around the world. And now – through her custom app – she’ll be able to interface with their symptoms even when they aren’t able to travel to her office for direct observation.

We’ll file this iPod Touch tale under “Wins for Medicine.”

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