A delay of three or more years in a definite endometriosis diagnosis is linked with increased symptom burden and significantly higher healthcare costs — by more than 50% — compared with patients diagnosed within one year of developing the first symptoms, a U.S.-based study shows.
The study, titled “Impact of Endometriosis Diagnostic Delays on Healthcare Resource Utilization and Costs,” was published in the journal Advances in Therapy.
Women with endometriosis experience significant healthcare expenses, with a previous study reporting direct healthcare costs three times higher in endometriosis patients than among women without the disease.
However, diagnosis of endometriosis is often delayed, sometimes by several years, due to the overlapping nature of symptoms with other gynecologic, urologic, and gastrointestinal disorders. Such delays impact the time it can take for some women with the condition to start receiving proper care.
The economic impact of such delayed diagnoses, however, remains unknown.
“Little is known about the impact of diagnostic delays on healthcare costs leading up to diagnoses,” the researchers said.
To learn more, the team performed a retrospective analysis of clinical data from 11,793 adults diagnosed with endometriosis from 2004 to 2016. The data were retrieved from the U.S. Optum Research Database, which includes information from more than 65 million individuals. Enrolled patients had a health plan with medical and pharmacy benefits for more than five years prior to diagnosis and one year following the earliest endometriosis diagnosis.
The women first sought medical treatment for symptoms that included painful sexual intercourse, called dyspareunia, generalized pelvic pain, abdominal pain, dysmenorrhea or painful periods, and infertility.
Based on the time patients had to wait for a diagnosis — from first symptoms to a final determination of their condition — they were assigned to one of three different groups. The short delay group, which included 4,446 patients, waited up to one year for diagnosis. For the intermediate delay group, numbering 3,179 women, diagnosis took one to three years. The long delay group, consisting of 4,168 patients, waited between three and five years for diagnosis.
Patients with a short delay were slightly older (mean age 39.8) compared with those with intermediate (mean age 38.9) or long delays (mean age 38.9)
The mean diagnostic delay was 2.09 years from the onset of endometriosis symptoms until diagnosis. The delay averaged 90.2 days for the short delay group, 733.4 days for the intermediate delay group, and 1,505.9 for the long delay group.
Common symptoms among the women included abdominal pain (67.3%), dysmenorrhea (52.0%), and dyspareunia (13.0%).
Patients with a short delay were more likely to have dysmenorrhea (54.4%) than those in the intermediate (49.6%) and longer delay (51.2%) groups. However, those women were less likely to have abdominal pain (48.5%) and infertility (8.4%) compared with the intermediate group, among whom 74.1% had abdominal pain and 13.2% had infertility, or compared with the long delay group, among whom 82.2% had abdominal pain and 14.9% had infertility.
The results showed that abdominal pain increased significantly with increasing diagnostic delay.
Almost all patients (95.8%) had at least one additional disorder (comorbidity). These included fatigue/nerve weakness (49.2% of patients overall), headache and migraine (42.8%), ovarian cysts (40.6%), urinary tract infections (38.8%), depression and anxiety (37.6%), and uterine fibroids (34.2%).
“Comorbidities tended to be the highest among patients with longer delays,” the researchers found.
Moreover, the number of visits to the hospital was higher among women with longer diagnostic delays — 6.6 visits — compared to those with intermediate (5 visits) and shorter delays (2.4 visits). Women with longer delays were significantly more likely to have an endometriosis-related visit to the emergency room.
The same tendency for more frequent visits in longer-delayed diagnosis also was seen for general hospital visits: mean number of 47.3 visits for those with a short diagnostic delay, 61.0 for those with an intermediate delay, and 69.1 visits for those with a long delay.
All-cause healthcare costs during the pre-diagnosis period averaged $28,376, with outpatient costs accounting for more than half (57.7%).
Those costs over the 60-month pre-diagnosis period were significantly higher in patients with longer diagnostic delays — an average of $34,460 — compared to those with intermediate — $30,030 — and short delays — $21,489.
“Mean total costs in patients with a long delay were 60.4% and 14.8% higher than costs in patients with a short and intermediate delay, respectively,” the researchers said.
Pharmacy costs were significantly lower among patients with a short delay in diagnosis ($4,351) than for those with an intermediate ($5,565) or long delay ($6,106) diagnosis.
Endometriosis-related costs accounted for 12.5% of all expenses and once again were higher for patients with a longer delay in diagnosis – $4,794 – compared to intermediate ($3,982) and shorter delays ($2,082).
Endometriosis-related pharmacy costs also were highest among those with a long delay and lowest for the shorter delay ($683 versus $568).
“The results of this study highlight the significant pre-diagnostic clinical and economic impact of diagnostic delays on patients with endometriosis,” the researchers said.
“Several approaches have been investigated to shorten the diagnostic delay, including earlier detection of endometriosis symptoms through increased physician awareness and training, use of non-surgical methods of diagnosis (i.e., transvaginal ultrasound), and early treatment interventions based on symptoms, signs, and clinical findings prior to confirmation with laparoscopy,” they said. However, more needs to be done, they said.
The researchers said this study highlighted the “hidden economic burden associated with the delay in the diagnosis of endometriosis and the important implications it has for healthcare decision makers, physicians, and payers.”
“Future research is needed in this area to determine if earlier detection of endometriosis using the above approaches can reduce this burden,” they concluded.
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