Endometriosis of the Diaphragm, What do the Doctors Know About it?

There is a lack of awareness about endometriosis of the diaphragm among patients as well as healthcare professionals causing delays in diagnosis.

Key Points

Highlights:

• Patients and some healthcare professionals are not aware of endometriosis of the diaphragm, and this causes delays in diagnosis and treatment.

Importance:

• Understanding the barriers to diagnosis and treatment can help provide better care to patients and avoid unnecessary delays.

What's done here:

• An anonymous survey to collect the information about the symptoms that women with endometriosis of the diaphragm experience was conducted.
• The type of surgery they have, and the outcomes were also assessed.

Key results:

• More than half (68%) of women had moderate-severe pain in the upper abdomen, in chest and in in the shoulder (64%), especially on the left (54%) 
• 35% had pain on both sides, and 11% had pain on the right side. 
• It took between one and 100 consultations with a primary care physician for the patient to be referred to a gynecologist (median 5 consultations).
• It took between 0 and 23 years for a patient to receive a diagnosis of endometriosis of the diaphragm (median 2 years).
• 31% of patients who consulted a gynecologist received a diagnosis within one year, 30% of patients needed two or more laparoscopies before diagnosis. 
• 65% of patients had improved (or no) symptoms after surgery, 61% had long-lasting relief, 39% had ongoing pain or have undergone further surgery.
• Age, timing of diagnosis, or type of surgery did not affect outcome.

Limitations:

• The results of the study may not be applicable to all healthcare settings as respondents were almost exclusively from Europe, North America, or Oceania.
• There may a bias in the type of patients who decided to respond to the survey with those who had to wait for a long time for a diagnosis possibly being more likely to respond in order to raise awareness about the condition.
• The results may be influenced by recall bias.  

Lay Summary

The median time between the first consultation with a primary care physician and receiving a diagnosis of endometriosis of the diaphragm is two years according to a study by U.K. researchers. In the worse case, it took 23 years for a patient to receive a diagnosis, the study found.

The reason for the delay is a lack of awareness among patients and healthcare professionals, according to Rachel Piccus and the co-authors of the study. “ The diagnosis of [diaphragmatic endometriosis] requires a high index of suspicion and involvement of surgeons trained in laparoscopic liver mobilization,” the researchers wrote. Endometriosis of the diaphragm is thought to affect around 1 and 1.5% of all endometriosis patients. However, the true incidence of the condition may be much higher because many cases may go undiagnosed. 

In order to measure the delays in the diagnosis and treatment of endometriosis of the diaphragm as well as evaluate the outcomes of surgery, researchers in Birmingham, the U.K., led by Dr. Robert Sutcliffe designed an anonymous survey, which they sent to members of endometriosis patient associations in 14 different countries. The survey contained questions about demographics, the duration, and nature of the symptoms, the type of surgery the patient had, and the outcomes of the surgery.

A total of 136 patients who had been diagnosed with endometriosis of the diaphragm responded to the survey. The respondents' median age was 34 and almost all of them were from Europe, North America, or Oceania. The main symptom that the respondents reported were a pain in the upper abdomen, chest, and shoulder. More than half of the women said the pain was on their right side, about a tenth said it was on the left side, and about a third said it was on both sides.

Of the 136 women, 122 consulted a primary care physician for their symptoms. It took on average five consultations for the primary care physician to refer the patients to see a gynecologist. The maximum number of visits a patient had to go for before being referred to a gynecologist was 100. One-third of women were diagnosed within a year of their first gynecological consultation. A third required at least two laparoscopic surgeries before receiving a diagnosis. 

A total of 116 women among survey respondents had surgical treatment for their condition and 113 provided information about surgery outcomes. According to this, 65% had a complete resolution or significant improvements in their symptoms regardless of age, timing of diagnosis, or type of surgery. Symptom relief was long-lasting for 61% of women, while for 39% pain continued and they have had to have further surgery.

“Recurrent symptoms are common following surgical treatment,” the researchers concluded and added that international collaborative studies are necessary to determine the long-term outcomes of endometriosis of the diaphragm. 

Research Source: https://pubmed.ncbi.nlm.nih.gov/33740695/