IAPMD PMDD Roundtable

In July 2021, IAPMD hosted the first-of-its-kind virtual Roundtable event to create a strategic plan to accelerate progress toward patient-centered outcomes in PMDD research and practice. We were excited to bring together experts of all kinds (known as the PMDD Community Coalition - PCC for short!) to push the patient voice into the spotlight - shaping the future of PMDD research! This global group of ‘PMDD stakeholders’ (patients, advocates, scientists, health care professionals) are committed to bringing the lived experiences of patients to the center of the PMDD research conversation. 

To date, no such coalition of individuals with an interest and concern for PMDD has ever existed!

We aimed to communicate the patient story to professionals who have the expertise and funding to do formal research and make systemic changes that improve the lives of people with PMDD both now and in the future. It is our hope that in illuminating the research and evidence, or lack thereof, and bringing forth the patient experiences, we can uncover more realistic and suitable approaches to research, care, and support for PMDD. 

We need to shift toward a more inclusive understanding of premenstrual disorders - with an emphasis on preventative, early detection/screening, and management approaches -- shifting our paradigm from problems to solutions.

This year-long project culminated in the development of two critical resources:

 

A Guide to Conducting Rigorous, Patient-Centered PMDD Research.

A Strategic Plan to Advance Patient-Centered PMDD Research

Watch Recordings from the 2021 IAPMD Roundtable

PMDD: Have We Done Enough or Are We Just Starting (29:58)

This selective review features developments in the research literature on PMDD, highlighting key findings and promising future opportunities. Presented by Amanda Myers, DPSC, research coordinator for the PMDD Community Coalition project.

Selective Literature Review - Full | Summary

Living a Half-Life: PMDD Patient Experiences and Insights (19:03)

Members of the Patient Insight Panel share their lived experiences of PMDD and present findings from a series of focus groups held in spring 2021. Topics covered include symptoms, life impact, support, care and treatment experiences, research priorities, systemic gaps, and recommendations.

Patient Insights Paper - Full

Loving Someone with PMDD: The Impact of PMDD on Partners (19:36)

The partner’s perspective on life with PMDD. Aaron Kinghorn, PMDD Partners Video Support Group Leader, shares insights from a survey on partners of women and AFAB individuals living with PMDD on how the disorder impacts their lives and relationship in positive, negative, and sometimes surprising ways.

Care Partner Survey - Full | Executive Summary

Caring for PMDD Patients: Care Provider Perspectives (30:53)

Liisa Hantsoo, PhD, member of the IAPMD Clinical Advisory Board, presents insights from clinicians who care for people with PMDD and shares data from the 2018 Global Survey on Premenstrual Disorders regarding patient experiences with different types of providers.

Care Provider Experiences Paper - Full | Executive Summary

Hotspots & Frontiers: Trends in Research Related to PMS & PMDD 1945-2018 (19:42)

What happened in PMDD research from 1945 to 2018? Katja Schmalenberger, PhD, presents findings from a recent study on PMDD research examining past trends and where the research is heading.

As a patient-led organization, IAPMD has been working for years to bring awareness to PMDD, a prevalent and little-understood premenstrual health condition. Thanks to a funding award through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI), IAPMD built an amazing team to help shape the future of women’s menstrual health research. 

PMDD Research.png

+ How are you defining ‘PMDD Research’?

We define research as the creation of new knowledge and/or the use of existing knowledge in a new and creative way so as to generate new concepts, methodologies, and understandings. Research is critical to increasing our understanding of PMDD. We hope our work on this project will help identify gaps in our knowledge that research can help fill. In particular, we hope to build recommendations in our strategic plan around four primary types of health research:

  • Population based - to examine social, cultural, environmental, occupational, and economic factors that impact health status
  • Biomedical - to understand normal and abnormal body functioning at the molecular, cellular, organ or whole body system
  • Clinical - to improve the diagnosis and treatment of conditions (therapeutic interventions)
  • Health Services/Systems - to improve the effectiveness and efficiency of health professionals (practice) and healthcare systems (policy)

How do patients want these to look? What should be the focus?

+ What does ‘patient-centred’ mean?

‘Patient-centred’ means that the patients impacted are put at the very heart of the conversation about research, care, and clinical practice:

  • The focus is on the patients’ beliefs, preferences, and needs
  • It is led by patient experiences - ‘we are the ones who have lived through it’
  • The outcomes decided are meaningful to patients - not just what medical experts think patients want the outcome to be

This is a relatively new concept in research - with PCORI being founded in the US in 2010. You can read more about this here.