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Background
Congenital uterine anomalies (CUAs) affect 5.5% of females and occur at higher rates in those with infertility or adverse pregnancy outcomes. Despite the high prevalence of CUAs, little is known about patients’ narrative and satisfaction. This study seeks to evaluate the patient experiences of clinical care in biologic females with CUAs at a tertiary healthcare system.
Methods
Biologic females ages 13 years or older with CUAs who received care at a tertiary healthcare system were contacted by the hospital's Joint Data Analytics Team via the electronic medical system to participate. Subjects who opted-in were contacted by our team and sent a 52-question survey (Figure 1) of optional, multiple choice and open-ended questions. Survey questions were created by the research team via Likert scale to measure response. Descriptive statistics were utilized. This study was approved by the IRB.
Results
We analyzed surveys completed by 12 respondents with CUAs. Participants reported Mayer-Rokitansky-Kuster-Hauser syndrome (n=2), septate (n=3), bicornuate (n=2), unicornuate (n=1), didelphys uterus (n=1). The average age at diagnosis was 22.8 ± 5.8 years old. Diagnosis of CUAs occurred as part of an evaluation for amenorrhea, infertility, or pregnancy loss. Time to diagnosis after the initial presenting symptom was less than 1 month (n=3), 1-3 months (n=2), 3-6 months (n=1) and 1-2 years (n=1). Participants received care from 1 (n=4), 2 (n=4) or 3 (n=1) providers. Patient experience was “excellent” (n=3), “good” (n=3) and “average” (n=1). No participant rated their experience as “poor” or “terrible”. Information about CUAs was obtained from the internet in 8 respondents. Environmental exposures of the mothers of respondents with CUAs included diethylstilbestrol (n=1), Bisphenol A (n=2), radiation (n=1), cigarettes (n=3), and alcohol (n=2).
Conclusions
Despite being a congenital anomaly, CUAs are often diagnosed in adulthood and in the setting of poor obstetric or gynecologic outcomes. According to our survey, patients had overall positive experience with care they received. We suspect satisfaction may have been influenced by the accessibility of sub-specialists in a tertiary care setting. Majority of patients used the Internet to learn more about their conditions, which suggests that vetted websites would be useful to augment counseling. Our survey results provide a reassuring summary of the patients with CUAs experiences and point to potential areas to improve care. Future directions for our study include increased participation within our hospital system and multicenter expansion. Additionally, we plan to utilize this data to facilitate the development of patient-centered outcomes research.
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Copyright
© 2023 Published by Elsevier Inc.
