Women with kidney disease have limited knowledge about how it impacts reproductive health
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Key takeaways:
- Thirty-three percent of patients admitted to guessing on all questions about how kidney disease impacts women’s health.
- Half of the patients interviewed had an OBGYN.
AUSTIN, Texas — Despite the significant impact that kidney disease and its treatments can have on women’s health, patients admitted knowing very little about it, according to a presenter at the National Kidney Foundation Spring Clinical Meetings.
Inspired by the work of her mentor, Mariana Markell, MD, Joya Ahmad developed an interest in health literacy in the context of reproductive health.
“I think sometimes we forget that people with ovaries and a uterus and a cervix still need to think about those organs even when their primary disease is of a different system. So, seeing CKD and kidney disease and transplant discussed with reproductive health was just really exciting to me as a student,” Ahmad a medical student at SUNY Downstate in New York, told Healio.
While conducting a literature review, Ahmad realized an instrument to describe women’s health literacy among patients with kidney disease didn’t exist to help her complete her research. Ahmad then began the process of building a survey tool, based on other validated instruments and added measurements she hoped to explore.
“It was intimidating to start a project that didn't have a foundation for me to build on, that didn't have a tool for me to work from, that required me to get creative and build something myself. And it was so much more rewarding than any other project I've done,” Ahmad said. “So, if there are any new researchers who are wondering, ‘Should I do this project? I have a question and I want to find the answer, but I don't have the tools...’ Tools can be made. And every tool was made by someone at some point, so why not you?”
Using the freshly developed survey, Ahmad interviewed 12 women with kidney disease (five with pre-dialysis CKD, four on hemodialysis and 2 transplant recipients). The survey assessed the perceived and objective knowledge of kidney disease’s impact on women’s health using a Likert scale. Questions included whether or not patients know if immunosuppressants were bad for pregnancies, if patients could get pregnant after a transplant and if irregular periods were normal during dialysis.
Survey results
Overall, 58% of patients scored in the 0-1 range, 25% scored in the 2-5 range and no patients answered more than half of the questions correctly. In fact, 33% of patients admitted to having guessed on all of the questions.
Additionally, patients had been asked whether or not they had an obstetrician-gynecologist (OBGYN) and whether they discussed women’s health issues with their nephrologist. None had discussed menopause with their nephrologist, and 16% discussed menstruation, fertility or birth control.
Half of the patients had an OBGYN, and they reported more knowledge about how CKD can affect fertility, menstruation and how medications can interact with birth control. Yet, 75% of patients in the study said they did not know anything about 100% of the questions, and analyses revealed there was no difference in knowledge between patients with and without an OBGYN.
Closing the knowledge gap
“A takeaway is that even when patients felt good or like they had access to women’s health education, something about that knowledge wasn’t sticking or being communicated in a clear enough way,” Ahmad said.
When asked how she would address this issue, Ahmad said she would sit down with each patient and go through all of their medications to make sure they knew which ones impacted pregnancy. Further, Ahmad said she would discuss what menstruation can look like with kidney disease.
“It's really important to make sure people know that the lack of a period does not mean the inability to get pregnant, because the last thing you want is an unplanned pregnancy in the middle of dialysis,” Ahmad said.
Additional solutions could include multidisciplinary collaboration, curriculum that involves reproductive health and awareness campaigns from kidney organizations.
“My hope with this is to not be finished with this one poster, but to do this survey with more patients in other hospitals and other clinics and get a better picture of the issue that we know is happening to make this a priority for people,” Ahmad said. She added, “My dream is to have a suite of assessments like this that are for various chronic diseases and reproductive health. I want everyone in every specialty to be assessing these things. I want every patient to get to have these conversations. We're starting with kidneys, but in my dream of dreams, we stop isolating reproductive health into a little silo on its own away from all the other organ systems.”
Moving forward, Ahmad plans to continue her research through the summer of 2023, and she is actively looking for an opportunity to expand the research to a larger patient population.
Joya Ahmad can be contacted at joya.ahmad@downstate.edu.
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Ahmad J. et al. Poster 197. Presented at: National Kidney Foundation Spring Clinical Meetings; April 11-15, 2023; Austin, Texas.
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