A six-question risk score designed for primary care could help clinicians identify patients who need further investigation or specialist referral.
A six-question clinical screening tool could help primary care clinicians identify adolescents and young women at higher risk of endometriosis and shorten the years-long delay to diagnosis.
The Simplified Adolescent Factors for Endometriosis (SAFE) score, developed by researchers at the University of Queensland, uses a short patient questionnaire to guide referral decisions in primary care.
Endometriosis affects up to 11% of Australian women of reproductive age and is characterised by the growth of endometrial-like tissue outside the uterus, causing symptoms such as dysmenorrhoea, chronic pelvic pain and infertility.
Diagnosis is frequently delayed by an average of six to eight years due to non-specific symptoms, limited awareness and normalisation of menstrual pain.
Professor Gita Mishra AO, director of the UQ’s Australian Women and Girls’ Health Research Centre, said the aim of the tool was to support earlier clinical recognition and referral.
“The test uses six questions to detect girls or young women at risk of endometriosis and in need of further assessment,” Professor Mishra said.
“Identifying which patients should be referred and treated is challenging and improving how patients are diagnosed is a major priority.
“By detecting endometriosis earlier – ideally in adolescents as soon as they begin their periods – we hope the tool will reduce the average six-eight-year diagnostic delay so we can start treatment as early as possible.”
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The SAFE score assesses six risk factors associated with endometriosis, including frequent pelvic pain, seeking treatment for pelvic pain, use of analgesics for pelvic pain, heavy menstrual bleeding, painful periods and a family history of endometriosis. Each factor contributes one point, producing a total score ranging from zero to six.
Higher scores indicate a greater likelihood of the condition and may support decisions to refer patients for further investigation.
The tool was developed using data from more than 9000 women participating in the Australian Longitudinal Study on Women’s Health. Six stable predictors were identified using multivariable logistic regression and bootstrapping methods.
In validation analyses, the simplified score demonstrated areas under the curve of 0.79 in both the training and internal test samples and 0.71 in an external cohort.
The research has been published this month in The Lancet’s eClinical Medicine.
Using a threshold of two or more risk factors, sensitivity ranged from approximately 47% to 64% across datasets, with specificity between 82% and 86%. Negative predictive values exceeded 89%.
“To our knowledge, this is the first study to develop and evaluate a model for the risk of endometriosis based on a sum of risk factors experienced at ages 16–19 years,” the researchers wrote.
“The SAFE score can be readily used in primary care without the need for invasive testing and little additional consultation time.”
The researchers emphasised the SAFE score was designed as a decision-support tool rather than a diagnostic test and may help clinicians triage patients for further investigation.
“This simple tool can be used in women of any age, but we have carefully chosen age-appropriate questions to target adolescents,” said Professor Mishra.
“Long delays in diagnosis can be due to unclear symptoms, lack of awareness, misdiagnosis, and normalisation of menstrual pain which impacts quality of life.
“The condition often involves surgery to confirm diagnosis, although experts are working to change this so the condition can be picked up through ultrasound or MRI.
“We need to be able to detect endometriosis early because our research found most women were diagnosed in their late twenties, often when they are trying to fall pregnant.
“Early diagnosis is critical because it can change treatment of fertility issues later on.
“The usual treatment route is ovulation induction, but this is not as effective as IVF for women with endometriosis.’’
Delays in diagnosis can affect disease progression, quality of life and fertility outcomes. Many women are diagnosed in their late twenties, often when seeking treatment for infertility.
The researchers plan to evaluate the tool in clinical settings including general practice, endometriosis and pelvic pain clinics in Brisbane, and assess whether it could be implemented as a digital decision-support app.
“The next step in our program of work is clinical validation of the SAFE Score for use in clinical settings and across diverse populations. It also seeks to translate the validated SAFE Score into a clinical decision support tool to guide early referral and investigation in adolescents and young women,” the researchers wrote.
“The benefits of reducing the time to a definitive diagnosis may need to be balanced against the potential risk of causing unnecessary anxiety by introducing the label of endometriosis to an adolescent girl.
“This highlights the importance of responsible communication and appropriate clinical counselling. We will work closely with end-users to ensure that the tool and its messaging are implemented in a supportive manner.”
