Exploring Qualitative Experiences of Premenstrual Dysphoric Disorder within the US Healthcare System Open Access

Abstract

Premenstrual Dysphoric Disorder is a premenstrual condition that affects 3-8% of the US population, yet knowledge on treatment and consistent diagnostic testing is lacking. It is a clinical disorder defined by the presence of cognitive-affective and physical symptoms presented in the week before menses. Historically, PMDD has been a controversial diagnosis due to ambiguity around diagnostic criteria and gaps in provider knowledge, leading to delays in diagnosis. 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. Understanding the main experiences and barriers to diagnosis will lead to an increase of appropriately diagnosed cases and, eventually, the delivery of proper treatment. 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. 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. Analysis methods using constructivist grounded theory revealed key barriers within the diagnostic and care process including patient, provider, and societal barriers. 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 the majority of the diagnostic and treatment process was burdened on the patient, and that successful navigation within the healthcare system was dependent on high levels of self advocacy. This study concluded that an official diagnosis did not result in doctors being able to treat PMDD. Instead, participants had to be reevaluated and diagnosed again with every new provider they saw. This was the first study of its nature 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.

Table of Contents

Chapter 1 – Introduction……………………………………………………………..Page 1

        Statement of the Problem………………………………………………………Page 1

        Significance Statement…………………………………………………………Page 3

Chapter 2 – Literature Review………………………………………………………Page 4

        Overview of PMDD……………………………………………………………Page 5

        Etiology of PMDD……………………………………………………………..Page 5

        History of PMDD………………………………………………………………Page 6

        Diagnosis of PMDD……………………………………………………………Page 7

        Controversies with the DSM…………………………………………………...Page 7

        Diagnostic Tools and Their Challenges………………………………………..Page 8

        Barriers to Diagnosis…………………………………………………………...Page 9

        Gender Bias as a Barrier to Diagnosis…………………………………………Page 9

        Consequences of Underdiagnosis of PMDD…………………..………………Page 11

        Treatment of PMDD…………………………...………………………………Page 12

        Current Issues with Treatment Options……………………………..…………Page 13

        Barriers to Management……………..…………………………………………Page 15

        Methodological Framework……………………………………………………Page 16

Chapter 3- Study Methods…………………………………………………………...Page 17

        Population and Sample…………………………………………………………Page 17

        Procedures…………………………...…………………………………………Page 18

        Methodological Framework……………………………………………………Page 16

Chapter 4- Results

        Sample Description…………………………………………………………….Page 25

        PMDD Symptoms/ Experiences……………………………………………….Page 26

        Patient Delay…………………………………..……………………………….Page 28

        Diagnostic Delay……………………..………………………………………...Page 40

        Treatment Delay………………………………………………………………..Page 45

        Condition Management Delay

Chapter 5- Discussion…………………………………………………………...…….Page 50

Chapter 6- Conclusion……………………………………………………………….. Page 56

References…………………………………………………………………………….. Page 58

Appendix A: Interview Guide……………………………………………………….. Page 78

Appendix B: Codebook………………………………………………………………. Page 81

About this Master's Thesis

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School	Rollins School of Public Health
Department	Hubert Department of Global Health
Degree	M.P.H.
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Public Health
Keyword	Women's Health Treatment Menstrual Health Qualitative Research Diagnosis U.S. Healthcare
Committee Chair / Thesis Advisor	Dr. Cari Jo Clark, Emory University
Committee Members	Dr. Anna Rubtsova, Emory University

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