In 2018, IAPMD joined Me v PMDD and Vicious Cycle in conducting a large global survey to gather quantitative information about the real impact of PMDD. This survey was marketed as the ‘Help Us Help You’ survey and is now referred to as the Global Survey of PMDs 2018 (GSPMD). We received more than 3000 responses, making it the largest known data collection in history involving those with PMDD.
The response to the Global Survey of PMDs 2018 was massive, and this meant there is a huge amount of data and variables to prepare, analyze, and publish, using 100% volunteer labor. Members of our Clinical Advisory Board (CAB) and their research volunteers have been working hard to prepare and analyze the data for scientific publication.
We decided to start the release of findings by writing a paper on a very high-impact topic: suicide.
Trigger warning: Do note that the following paragraphs contain some information that some people may find distressing. Please practice self-care and choose to read this at a time when you feel able to do so safely.
Prevalence of lifetime self-injurious thoughts and behaviors in a global sample of 599 patients reporting prospectively confirmed diagnosis with premenstrual dysphoric disorder.
This paper includes data from nearly 600 GSPMD survey responders. Responders reported that across their lifetimes, they had experienced active suicidal ideation at some point (72% of respondents), had engaged in planning for suicide (49% of respondents), had suicidal intent (42% of respondents), had prepared for a suicide attempt (40%), or had made a suicide attempt (34%). Over half of the responders reported they had engaged in non-suicidal self-injury (51%).
These findings highlight the need for more research on detecting and preventing suicidal thoughts and behaviors in PMDD. They also emphasize the need for clinical practice guidelines for PMDD that include frequent screenings for suicide risk.
Our second paper focused on the experiences of those with PMDD with various treatment providers (gynecologists, psychiatrists, and primary care providers).
Patient Experiences of Health Care Providers in Premenstrual Dysphoric Disorder: Examining the Role of Provider Specialty.
This paper analyzed responses from 2,512 participants in the GSPMD survey who had sought care for PMDD symptoms. The results showed that psychologists were rated better than other providers on interpersonal factors (“My provider showed compassion to me when I described my symptoms,” “My provider believed me when I spoke about my premenstrual symptoms,” and “My provider had willingness to learn about PMDD…”).
Survey responders rated gynecologists and psychiatrists the highest in terms of knowledge about PMDD (“My provider had knowledge of PMDD,” “My provider had knowledge of different treatment options for PMDD,” “My provider had knowledge about the efficacy of different treatment options for PMDD”).
Finally, survey responders reported that gynecologists were more likely than other providers to ask patients to track symptoms daily for PMDD diagnosis or treatment, consistent with best practices. Our findings revealed that different providers have different strengths in assessing and treating PMDD.
The survey results also suggest gaps in knowledge about PMDD among providers, so we propose that graduate and medical training programs may benefit from including more information on evidence-based evaluation and treatment of PMDD so that providers will be better informed.
Why is it important to publish these findings in a scientific journal? Why can’t we just send the numbers to the press, or publish them on our website?
We believe it is in the best interest of the PMDD community to take the time to submit the results of the Global Survey of PMDs 2018 to scientific journals for publication where they will be validated through a rigorous peer-review process. The benefits of this process are many and include: (1) validation from the scientific community that the research and the findings are trustworthy and accurate, (2) improvements in our analysis by allowing other experts in the field to review our work, and (3) increased likelihood for high-profile news media organizations and journalists to publish the results of our study. Media outlets such as the BBC, New York Times, CNN, NPR, and Fox News will not publish research findings that have not been peer-reviewed and published in a scientific journal.
Ultimately, we believe the results of our global study deserve the impact that only scientific publications can provide. We plan to shout the findings from the rooftops and to every major news media outlet as soon as they are published.