Women Unhappy With the Long Waiting Periods For Polycystic Ovarian Syndrome Diagnosis

Highlights

• Polycystic ovarian syndrome (PCOS) affects one in 10 women and is the main cause of infertility among them.
• The level of dissatisfaction among women suffering from PCOS is higher due to longer waiting time for consultation and diagnosis.
• The high prevalence of PCOS warrants the need for higher level of awareness among women and healthcare professionals.
• This awareness should be used to ensure speedy diagnosis and better health outcomes for women with PCOS.

Women who suffer from polycystic ovarian syndrome or PCOS are dissatisfied with the amount of time they have to wait and the number of health professionals they have to consult before being diagnosed with the condition.

The research states that two among three women are affected by this waiting-time.

Polycystic Ovarian Syndrome

Polycystic Ovarian Syndrome (PCOS) is a chronic health condition that affects one in 10 women in their child-bearing age.

It occurs due to the imbalance of the reproductive hormones. This hormonal imbalance impacts the ovaries. Ovaries produce and release eggs as part of the monthly menstrual cycle. But in PCOS, the eggs are either not produced or released during ovulation.

It is characterized by metabolic and reproductive problems.

Women suffering from PCOS are at an increased risk of developing metabolic disorders like diabetes and obesity. Around 40% of the women suffering from diabetes between the ages 20-50 years have PCOS.

PCOS causes reproductive issues like infertility and irregular menstruation. It is responsible for 70% of infertility-related problems.

Psychological problems like depression and anxiety are also triggered by PCOS.

Around 9% to 18% of the women in their child-bearing age suffer from PCOS, according to the currently accepted Rotterdam diagnosis, international prevalence studies and guidelines.

Less than 50% of the women are diagnosed with PCOS leaving the remaining undiagnosed.

"Given the prevalence of PCOS, it is important for women and healthcare professionals to be more aware of the condition," said one of the study's authors, Helena Teede, FRACP, PhD, of Monash University in Melbourne, Australia. "Despite the misleading name, PCOS is not primarily an ovarian condition, but instead is a hormonal disturbance with diverse health effects that is largely inherited. The process of diagnosing PCOS needs to be improved, and the diverse set of metabolic, reproductive and psychological features need to be understood and addressed."

A Few Key Features of PCOS are:

• Having increased number of immature eggs in the ovaries, which is detected through ultrasound.
• Higher levels of testosterone characterized by clinical features like excess body hair.
• Irregular menstrual cycle or absences of menses.

Survey

Researchers conducted an international cross-sectional study. The initial studies were conducted in Australia and then the researchers approached two large international PCOS patient support groups - U.S based PCOS Challenge and U.K based Verity.

Questionnaires were distributed to the participants through their website.

Eligibility criteria for the study:

• Women should be over 18 years of age
• They should be diagnosed with PCOS

"We were interested in women's diagnosis experience and satisfaction with information and educational materials they received at the time of diagnosis," Teede said.

Initially 1550 women from 32 countries responded to the survey. But 165 participants were excluded because they did not fit into the eligibility criteria.

So a total of 1385 women were enrolled for the survey.

Response from Survey

Nearly half of the women surveyed internationally saw three or more healthcare providers before they were diagnosed.

For a third of the respondents, the diagnostic process took more than two years.

Some of the respondents reported waiting for months or years for a diagnosis. They also had to visit multiple healthcare professionals.

A wait of six months or longer for diagnosis increased the level of dissatisfaction among women compared to those who were diagnosed in a shorter period.

"Our findings show women are dissatisfied with the diagnosis experience and that there are clear opportunities to improve awareness, diagnosis and health outcomes for women with PCOS," Teede said.

Less than a quarter of the survey respondents were satisfied with the information they received about common treatments for PCOS, including lifestyle management and medications, when they were diagnosed with the condition.

More than half reported that they had not received any information about long-term PCOS complications or emotional counseling or support.

The survey results, along with new international guidelines and awareness education initiative, will be used to improve PCOS education and care.

The study titled "Delayed Diagnosis and a Lack of Information Associated with Dissatisfaction in Women with Polycystic Ovary Syndrome," is published in the Endocrine Society's Journal of Clinical Endocrinology & Metabolism.

References:

1. Polycystic Ovarian Syndrome - (https://www.womenshealth.gov/publications/our-publications/fact-sheet/polycystic-ovary-syndrome.html)
2. What is PCOS? - (http://www.pcosfoundation.org/what-is-pcos)

Source: Medindia