Skip to content

Interview study, 2023

What challenges do women face when trying to get diagnosed and treated for PMDD?

Women face significant barriers at every stage. Diagnosis and treatment require high levels of patient self-advocacy, and many women struggle with both healthcare provider knowledge and societal recognition of the condition.

Early or limited evidence 32 women in the US who identified as having PMDD (some without official diagnosis)

What they did

Conducted 32 in-depth interviews with women in the US who identified as having PMDD (some without an official diagnosis). Researchers asked about their experiences seeking diagnosis, getting treatment, and managing the condition.

What they found

Women described feeling like they had two separate identities and that PMDD controlled their lives. The diagnostic and treatment process relied heavily on the patient advocating for themselves. Barriers existed at the patient level (not knowing how to describe symptoms), provider level (doctors lacking knowledge), and societal level (stigma and misunderstanding).

What it means for you

The healthcare system needs clearer diagnostic criteria and treatment guidelines for PMDD. The main limitation is that this is a small qualitative study in the US only, so experiences may differ in other countries.

32

Participants interviewed

3-8%

Estimated PMDD prevalence in US

About the study

Original title
Exploring diagnosis and treatment of premenstrual dysphoric disorder in the U.S. healthcare system: a qualitative investigation
Authors
Chan K, Rubtsova AA, Clark CJ
Journal
BMC women's health
Year
2023
Study design
Interview study
Participants
32
What was tested
None; this was a qualitative interview study
Open access
Yes
Original abstract

Background: Premenstrual Dysphoric Disorder (PMDD) is a premenstrual condition that affects 3-8% of the US population, yet knowledge on treatment and consistent diagnostic testing is lacking. While research concerning the epidemiology and pharmaceutical treatments for this condition has increased, there is a lack of qualitative studies on the experiences of patients who live with this condition. The aim of this study was to explore the diagnostic and treatment experiences of PMDD patients in the U.S. healthcare system and identify barriers to diagnosis and treatment. Methods: This study uses a feminist framework with qualitative phenomenological methods. We recruited participants who identified as having PMDD, regardless of official diagnosis, through online forums within the U.S. PMDD community. The study conducted 32 in depth interviews with participants on their experiences with PMDD diagnosis and treatment. Thematic analysis methods revealed key barriers within the diagnostic and care process including patient, provider, and societal barriers. Results: This study presents a PMDD Care Continuum that represents the timeline of participant experiences beginning from symptom onset towards official diagnosis, treatments, and ongoing management of the condition. Participant experiences demonstrated that much of the diagnostic and treatment processes were burdened on the patient, and that successful navigation within the healthcare system was dependent on high levels of self-advocacy. Conclusions: This was the first study to describe the qualitative experiences of patients who identified as having PMDD in the U.S. Further research is needed to refine and operationalize diagnostic criteria and treatment guidelines for PMDD.

Reproduced under CC-BY.

Topics