Researchers urge more talk on menstrual pain in sickle cell clinics
Over 60% of women, girls report SCD-related pain in new US study
Written by |
Most women and girls with sickle cell disease (SCD) experience disease-related pain during menstrual periods, but many are unaware that medical treatments — such as birth control pills — may help alleviate period-related pain in SCD, according to a new study by U.S. researchers.
Based on these findings, the research team is urging clinicians who treat people with SCD to be proactive about discussing menstrual symptoms with their female patients. To help facilitate such discussions, the researchers are making a conversation guide on reproductive health in SCD freely available to patients and clinicians.
“Not asking women and girls with sickle cell disease about their periods as standard of care not only ignores the pain of many female patients, but, now, the research,” Neha Bhasin, MD, the study’s senior author and the director of the Pediatric Comprehensive Sickle Cell Center at University of California, San Francisco’s Benioff Children’s Hospital Oakland, said in a university news story outlining what the team found to be “gaps in reproductive health care.”
Data from a commonly used bleeding questionnaire and a new patient survey showed that more than 60% of girls and women with sickle cell experience SCD-related menstrual pain. More than a quarter of these patients who are not on hormonal contraceptives did not know birth control pills could potentially ease period pain.
“These findings suggest that menstrual assessments in sickle cell clinics may improve attention and personalized care for female patients with SCD,” the researchers wrote.
The study, “Role of Menstrual Bleeding Assessments in Sickle Cell Clinics,” was published in the journal JAMA Network Open.
A genetic disorder, SCD affects the shape of red blood cells, making them stiffer and stickier than normal. These abnormal cells are prone to forming blockages that can lead to SCD complications, such as pain episodes called vaso-occlusive crises (VOCs).
Little is known about impact of menstruation on SCD
The disease affects people of all sexes equally. In female patients, however, SCD can lead to particular issues with reproductive health, ranging from delayed puberty and early menopause to pregnancy complications and abnormal bleeding in the uterus.
“Vaso-occlusive events can be triggered by cold exposure, stress, dehydration, and low oxygen [levels], but menstruation is often overlooked as a cause,” the researchers wrote. “In addition, menstruation is associated with pain, which may affect the [VOC-related] pain experience in female individuals with SCD.”
Still, the impact of menstrual periods on SCD has received little attention from scientists, according to the researchers. Aiming to bridge this gap, Bhasin and colleagues across the U.S. distributed validated and newly created surveys to 13 U.S. sickle cell centers. The target audience was both female SCD patients and their healthcare providers.
We designed the study to understand women and girls’ experiences better, and also to open up a dialogue between patients, hematologists [specialists in blood disorders], and reproductive health specialists about the serious pain these patients are facing.
Eligible patients had to have experienced their first period more than a year prior to survey completion and to have had at least one menstrual bleeding in the previous year.
“We designed the study to understand women and girls’ experiences better, and also to open up a dialogue between patients, hematologists [specialists in blood disorders], and reproductive health specialists about the serious pain these patients are facing,” Bhasin said.
More than 200 individuals completed age-appropriate validated menstrual bleeding questionnaires (MBQs) to evaluate patterns of bleeding during periods. About two-thirds of these participants were adults, and the rest were adolescents.
Most of these patients (98.6%) also completed the newly created patient survey — meant to evaluate health care use, clinical data, and access to and use of medications — and most of their doctors completed the newly created clinician survey, designed to assess their actions after reviewing the patient surveys.
Some patients unaware birth control can ease menstrual pain
The MBQ data showed that about 1 in 4 females had abnormal uterine bleeding. This was significantly associated with higher rates of hospitalizations in the six months prior (59.1% vs. 34.5%), according to the researchers.
The results of the new patient survey showed that nearly two-thirds (64%) of respondents experienced SCD-related pain during their periods. Significantly more women than girls reported this pain (70% vs. 55%).
Most of these patients rated menstrual pain as moderate or severe in the MBQ, while most of those reporting no SCD-related pain around their menstrual cycle reported slight or moderate menstrual pain.
Data also indicated SCD patients who report period-related SCD pain were significantly more likely to go to the emergency department (63.4% vs. 41.5%) and to be hospitalized (50.4% vs. 23%) in the six months prior to the survey.
Medical treatments such as hormonal birth control pills can help regulate or eliminate menstrual periods. As such, they may be effective for managing period-related SCD pain.
However, despite the high rate of period-related SCD pain, fewer than 20% of the respondents reported taking birth control. More than a third of them (38%) reported taking these medications for period-related pain or SCD pain, and more than a quarter (28%) for pregnancy prevention.
Importantly, the researchers noted that 27% of those not on hormonal contraception said they were not aware that hormonal medications might help with period-related symptoms.
“We … confirmed that the use of and education about hormonal contraceptive therapies among female patients with SCD is minimal,” the researchers wrote.
Findings highlight gap between patients’ experiences and care
These data highlight a disconnect between patients’ experiences and the care they are provided, according to the researchers. The team suggests this is likely because menstruation carries societal stigma and taboos, so patients may be hesitant to bring it up if doctors don’t ask.
As such, the researchers said these findings emphasize the importance of SCD clinicians proactively initiating discussions about menstruation and reproductive health more broadly with their female patients.
“When asked what next steps clinicians were planning to take in response to patient survey results, most planned an intervention,” the researchers wrote.
Providing education to the patient was the most commonly selected intervention (for 72% of patients), followed by referral to a specialist for women’s health (50%).
“Through this study, we hope that by facilitating a dialogue about reproductive health between sickle cell clinicians and their patients that further steps and research will be taken to improve reproductive health in individuals with SCD,” the scientists concluded.
