World Health Organization adds Premenstrual Dysphoric Disorder (PMDD) into the ICD-11

The IAPMD Board of Directors approved the following position statement on the World Health Organization’s inclusion of PMDD in the ICD-11 in June 2019. The position statement will be used to guide IAPMD’s programming and messaging as it relates to how PMDD is classified and treated.

Background:

In a landmark decision in May 2019, the World Health Organization (WHO) added Premenstrual Dysphoric Disorder (PMDD) to the International Statistical Classification of Diseases and Related Health Problems, Eleventh Revision (ICD-11). PMDD now has its own ICD code (GA34.41), validating PMDD as a legitimate medical diagnosis worldwide and acknowledging our growing scientific and medical understanding of this little known but debilitating condition. Although its primary location in the ICD‐11 is in the chapter on diseases of the genitourinary system, PMDD is cross‐listed in the subgrouping of depressive disorders due to the prominence of mood symptomatology.

The new ICD-11 diagnosis defines premenstrual dysphoric disorder (PMDD) as “a pattern of mood symptoms (depressed mood, irritability), somatic symptoms (lethargy, joint pain, overeating), or cognitive symptoms (concentration difficulties, forgetfulness) that begin several days before the onset of menses, start to improve within a few days after the onset of menses, and then become minimal or absent within approximately 1 week following the onset of menses.”

The ICD-11 diagnostic criteria are consistent with the definition of PMDD as originally codified in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (5th Edition; DSM-5). As in the DSM-5, the ICD-11 requires that symptoms be tracked against the cycle for two months to confirm the cyclical symptom pattern. Whereas the DSM-5 is a specialist document used primarily by mental health researchers and health care providers in the United States, the ICD is a global system of diagnostic classification that is used around the world by physicians of any specialty, nurses, other providers, researchers, health information managers and coders, health information technology workers, policy-makers, insurers and patient organizations. This global system allows the global community to compare and share data in a consistent and standard way – between hospitals, regions and countries, and over periods of time.

This groundbreaking inclusion of PMDD in the ICD-11  is significant because…

  • it ensures the disorder will now be recognized globally as a legitimate medical condition requiring diagnosis and treatment,

  • the global scientific community will now have shared language and definitions with which to diagnose and study the condition,

  • physicians of all specialties are more likely to be trained in PMDD diagnosis and management,

  • medical reimbursement for evidence-based PMDD treatments could become more standardized and streamlined, and

  • PMDD will be differentiated from the less severe collection of premenstrual symptoms commonly known as PMS.  

Perhaps most importantly, the inclusion of PMDD in ICD-11 means that patients with PMDD around the world can now be validated by receiving a clear, biologically-based diagnosis to explain their symptoms.

Scientific Summary:

Twenty years of experimental research has revealed the following key pieces of scientific knowledge about PMDD:

  1. Hormone levels and patterns appear normal in those with PMDD,

  2. Those with PMDD show abnormal brain response to allopregnanolone, a GABAergic metabolite of reproductive hormones,

  3. The brain cells of patients with PMDD show abnormal expression of hormone-processing genes,

  4. Those with PMDD show altered functioning of the brain’s serotonin and GABA systems across the menstrual cycle,

  5. PMDD can be treated by targeting the abnormal effects of hormones and their metabolites in the brain: Selective serotonin reuptake inhibitors (SSRI) correct serotonergic alterations in PMDD and are effective for up to 75% of patients, and novel treatments that reduce levels or binding of hormone metabolites with the GABA-A receptor have shown initial promise;

  6. Menopause is the only “cure” for PMDD: Symptoms subside after natural menopause, and, in treatment-resistant cases, a medical (GnRH agonists) or surgical (oophorectomy) menopause usually eliminates symptoms.

In sum, mounting evidence indicates that PMDD is caused by a biological brain difference and can be treated using biological interventions. This justifies its inclusion in ICD-11 as a medical disorder.

Clinical Recommendations:

The IAPMD Clinical Advisory Board has recently compiled a thorough review of evidence-based treatments for PMDD. Generally speaking, once a diagnosis has been confirmed by charting the pattern of symptoms against two menstrual cycles, evidence-based treatment proceeds in the following order: (1) SSRIs to correct serotonergic abnormalities in the luteal phase, (2) drospirenone-containing oral contraceptives to suppress ovulation and related hormone flux, (3) GnRH agonists (usually with stable add-back of E2 and P4 for long-term treatment) to suppress ovarian hormone production and related flux, and (4) oophorectomy. Additionally, some other promising treatments are currently being evaluated that will aim to reduce the impact of normal cyclical hormone changes on brain function in PMDD, including Sepranolone, a novel compound that blocks the activity of the progesterone metabolite allopregnanolone at the GABA-A receptor in the brain, and (2) dutasteride, a compound that reduces the normal metabolism of progesterone to allopregnanolone.

Historically, PMDD has been studied and treated by both (1) nervous system (brain) experts (neuroscientists and psychiatrists) and (2) reproductive system experts (reproductive endocrinologists, obstetrician-gynecologists). This multi-specialty approach has been reinforced by PMDD’s ICD-11 cross-listing in multiple areas; the section on mental, behavioral, and neurodevelopmental disorders, as well as the section on diseases of the genitourinary system (system of the reproductive organs and the urinary system). This will foster more effective collaboration between these specialties.

Given that evidence-based treatment algorithms for PMDD require a broad set of clinical expertise and skills, multiple providers with different specialties are usually required to offer truly comprehensive care to an individual with PMDD. In complex cases, differential diagnosis using standardized psychiatric interviews and daily symptom ratings can be carried out by any mental health professional. Psychiatrists are generally best trained in dosing and titration of SSRIs, although many other prescribers are comfortable managing SSRIs. Induction of medical menopause using injectable GnRH agonists is generally done under the supervision of or consultation with a gynecologist or reproductive endocrinologist, and oophorectomy is, of course, carried out by surgical gynecologists. When severe impairment or suicidality is present, close tracking of patient progress and management of suicide risk may be best carried out during weekly visits with a mental health provider who is knowledgable about PMDD and can communicate progress with other providers.

Therefore, we recommend that clinicians who wish to treat PMDD build collaborative, multidisciplinary treatment teams for PMDD patients in order to facilitate patient access to the full range of evidence-based treatments. It is our hope that the inclusion of PMDD in ICD-11 will facilitate greater collaboration among treatment providers of differing specialties.

Policy Recommendations:

The IAPMD recommends implementing policies and public health measures that allow early identification of PMDD in girls.

The IAPMD recommends collaborative associations among psychiatric and gynecological organizations focused on developing more effective collaborative treatment models.

The IAPMD urges global and national physician organizations to develop evidence-based guidelines for collaborative comprehensive care of PMDD by primary care providers, gynecologists, psychiatrists, and other professionals.

The IAPMD recommends that residents in both OB/GYN and Psychiatry be trained in advanced evidence-based treatments for PMDD, including administration of GnRH agonists (and management of stable hormone add-back in the case of long-term GnRH agonist treatment) and evaluation/referral or execution of oophorectomy for treatment-resistant, severe PMDD. We also recommend that graduate students and interns training to be mental health providers, including licensed clinical social workers, licensed professional counselors, and clinical psychologists, be given training in the differential diagnosis of PMDD using daily ratings, and be trained in appropriate referral protocols for individuals requiring PMDD treatment.

The IAPMD enthusiastically supports the WHO’s inclusion of PMDD in the ICD-11 and recognizes that this is an important step in the advancement of care for patients with PMDD around the world. IAPMD looks forward to working with the World Health Organization to create and distribute information on PMDD as well as continuing to provide no-cost peer support to those who need it regardless of geographic location or ability to pay.

About the IAPMD:

The International Association for Premenstrual Disorders (IAPMD) is the leading voluntary health organization which aspires to create a world where people with Premenstrual Dysphoric Disorder (PMDD) and Premenstrual Exacerbation (PME) can survive and thrive. Our mission is to inspire hope and end suffering in those affected by Premenstrual Disorders (PMDs) through peer support, education, research, and advocacy. What began as a collective of fellow sufferers in 2013 has grown into a global movement accelerating the progress being made around the world.

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