Patients’ unmet information needs and gaps of obstetric ultrasound exam: A qualitative content analysis of social media platforms

Abstract

Purpose:

A healthy pregnancy is critical to ensure a healthy birth. Uncertainty and a lack of information often lead to anxiety during pregnancy, which may negatively affect health outcomes. Women become inquisitive during this period and increasingly seek out pregnancy-related health information online. In this study, we aim to understand the unmet information needs of obstetric ultrasound exams through a qualitative content analysis of social media posts.

Methods:

This is a qualitative content analysis study. We systematically gathered pregnancy-related consumer health questions from three public forums (Yahoo! Answers, BabyCenter, PregnancyForum) and one ultrasound internet forum (Reddit/ultrasound). We used a purposive sampling strategy. We only included questions about ultrasound exams, and we excluded any questions related the cost or training of the ultrasound exam. We also coded the emotion expressed by the women in the questions we included. After coding each question, we categorized the data into thematic topics and subtopics.

Results:

We collected a total of 435 questions that met the inclusion criteria. The thematic analysis included nine major themes. These themes include ultrasound exam preparation, exam expectancy, timing of the ultrasound exam, image interpretation, report interpretation, result explanation, women’s emotions, and healthy lifestyle. In addition, we identified seventeenth subtopics.

Conclusion:

In this social media study, we discovered major information gaps that should be filled to better support health consumers’ understanding of obstetric ultrasound exams and result reports. The information gaps could become barriers to healthy decision-making and create stress among pregnant women. More work needs to be done to mitigate the information gaps, such as providing more consumer-friendly and personalized information during pregnancy.

1. Introduction

An obstetric ultrasound is a medical procedure that uses an ultrasound machine to perform an examination and observe a fetus in the womb. It is used to monitor fetus development and detect possible congenital anomalies, fetal growth disorders, multiple gestation pregnancies, and other placental abnormalities [1]. Although an obstetric ultrasound is important for detecting any gestational abnormalities, it may also lead to positive or negative psychological effects for the patient. Several studies have discussed the psychological effects of ultrasound exams during pregnancy [2–4]. Ekelin et al. [2] discussed how the ultrasound can offer a sense of assurance and reduce anxiety among parents. This is not always the case, and some women become anxious during the ultrasound exam either because of the sonographer’s behavior during the exam or their inability to see the monitor [3]. Also, ultrasound exam may detect a minor fetal anomaly or “Soft marker” such as choroid plexus cysts or echogenic bowel. These minor anomalies might rise a concern to the sonographer and the obstetrician but most of the time it could be false alarm and disappear in the follow up exam [5]. In a study conducted about the importance of information and support following a suspected second-trimester anomaly that is later discarded, they found that discussing “soft markers” with parents even if it is minor increase parents worries and may continue to linger even after the medical concern was discarded [5]. They also found that women needed more knowledge than what they received at the hospital and many of the women turned to the internet for information about the condition [5]. Providing comprehensive information for the women about the ultrasound exam and results and providing them access to the images can reduce their level of anxiety [3,4]. Therefore, it is important to provide women with enough information in order to improve their satisfaction and psychological well-being, which in turns affects maternal–fetal bonding [3] and pregnancy health [6].

According to Forster et al. [8], maternity patients are inquisitive, and often there is insufficient time to answer all the patients’ questions in a clinical visit. In this study, we aim to identify the unmet information needs among pregnant women before and after ultrasound exams. To the best of our knowledge, there are no studies that investigate the exact information women are seeking before or after an ultrasound exam. Most existing studies mention that the women lack knowledge and their need of information; this has been observed when women complain about the need of knowledge when they were expecting a baby with abnormalities [5] when they were unaware of the purpose of an ultrasound exam and its technical limitations [8], or when the procedure of the exam and the result had not been explained to them [9].

The purpose of this study was to leverage social media question and answer (Q&A) platforms to discover unmet information needs and knowledge gaps among pregnant women who are seeking to mitigate anxiety about ultrasound exams. Use of social media and internet or web forums for gathering information can be helpful because of the wide adoption of internet use across the world. Web forums have been discussed and analyzed in different studies [10–16]. The social Q&A websites allow users to ask questions and contribute to discussions about a topic of interest and receive answers and advice from other users. Health is one of the most popular topic categories in these platforms. Health consumers write posts to interact with one another and share thoughts and concerns. This makes social media forums an ideal resource for exploring the relationship between concepts and gathering direct and detailed information about personal health interests. Many users with different levels of skills and knowledge use these platforms.

2. Methodology

2.1. Data source and collection

Our goal was to collect consumer health questions from social media forums to identify pregnant women’s information needs. In this study, our source of data was 3 forums (Yahoo! Answers, BabyCenter, PregnancyForum) and a subreddit forum (Reddit/ultrasound). Yahoo answer was one of the largest QA platforms before it was closed with 21 million users from the US and 90 million users worldwide [14]. Because the rich amount of data and large user base, researchers are still using the yahoo! answers data to understand the patients’ information needs and also use the data for their studies [15,15]. The other 3 forums were selected because of their popularity in obstetrics [17] and ultrasound domains [15], and to ensure that the themes and subthemes cross validate each other from the data of all the four forums we selected.

We performed a qualitative inductive content analysis of posts submitted between February 2018 to November 9, 2020, to assess the unmet information need of pregnant women undergoing or about to undergo an obstetric ultrasound exam. The contents of these topics were coded using the inductive content analysis process [17]. Content analysis processes have been used by several researchers who adopted social media as their data source [10,16]. The inductive approach is particularly useful if there is no adequate previous knowledge about the phenomenon or if this knowledge is fragmented [17]. We used open code and grouped, categorized, and abstracted the data [17]. The sampling process was intended to retrieve threads that contain questions about ultrasound exams. We used a purposive sampling strategy to find users who posted questions about obstetric ultrasound exams, and we determined the sample size using theoretical saturation.

In this study, we systematically reviewed 985 threads in the 4 forums and selected threads that contained questions or comments about ultrasound exams to assess the information needs of pregnant women. This strategy was used to determine what information a woman needs before or after an ultrasound. EMA organized the data, generated initial codes, and systematically identified and coded users’ intents when requesting information. JL did a secondary revision and refinement of the codes. Then, we analyzed and created thematic maps of the main topics and subtopics. Finally, TA and MW refined the topics and subtopics, and we finalized the analysis.

2.2. Thematic analysis

We included posts related to patients’ health information needs regarding an ultrasound exam. We also coded the negative emotions the women expressed in their comments and questions. We excluded any questions related to the exam costs or questions from students or practitioners about the ultrasound exam.

We then synthesized the collected information into themes. Each theme represents a key group of information gaps patients have frequently asked about or discussed. After categorizing the collected data, subthemes were included within each of the major theme groups. For each themes, we counted the frequency of the questions and calculated the percentage of posts that contain the theme.

3. Results

The analysis revealed eight themes related to obstetric ultrasound information needs, as shown in Table 1. These themes include: 1) Safety, 2) Questions before ultrasound exams, 3) Report interpretation, 4) Image interpretation, 5) Result explanation, 6) expressions of negative emotion, 7) Food intake, 8) Lack of communication. Fig. 1 show the ultrasound exam workflow and illustrate the women questions and concerns of different topics related to the exam.

Table 1.

Percentage of thematic topics and subtopics.

Main themes	Subthemes	Percentage per theme	Percentage of total	Number of questions or expressions
Safety (n = 80) (18.39%)	Doppler	21.25%	3.90%	17
	Vaginal ultrasound	17.5%	3.21%	14
	Ultrasound beam	61.25%	11.26%	49
Questions before ultrasound exam (n = 83) (19.08%)	Exam preparation	28.91%	5.52%	24
	Exam expectancy	40.96%	7.81%	34
	Timing to do obstetric ultrasound	30.12%	5.74%	25
Report interpretation (n = 72) (16.55%)	Measurements	27.77%	4.59%	20
	Terms	34.72%	5.74%	25
	Acronym	37.5%	6.21%	27
Results explanation (n = 113) (20.91%)	Gestational age	39.82%	10.34%	45
	Diseases and conditions	31.85	8.27%	36
	Presence and/or absence of GS, fetal pole, and heart rate	28.31%	7.35%	32
Image interpretation (n = 87) (20%)	Gender reveal	69%	13.8%	60
	Location and shape	31%	6.2%	27
Negative emotion (n = 114) (26.20%)	Negative emotion		26.20%	114
Healthy lifestyle (n = 6) (1.37%)	Healthy lifestyle		1.37%	6
Lack of communication (n = 15) (3.44%)	Lack of communication		3.44%	15

Fig. 1.

Workflow of ultrasound exam and semantic relationships of a key data elements in social media questions.

3.1. Report interpretation

We defined the report interpretation theme as a need to interpret and understand a medical concept, term, or measurement in the report content. This theme contains three subthemes: 1) questions about measurements, 2) questions about terminologies, and 3) questions about acronyms. Many pregnant women have difficulty understanding different measurements (4.59%), medical terminologies (5.74%), and acronyms (6.21%) that appear in the obstetric ultrasound report. For example, women in the second trimester often ask what “AFI” means. They also ask about medical terminology such as “lateral ventricle” and measurements such as cervix length and heart rate. They often wonder whether what they are seeing is normal. We noticed women’s struggles to comprehend these types of information in a medical report were associated with negative emotions.

“… … … The report says that the fetus is about 35–36 weeks. The other readings are

BPD 8.7 cms

HC 30.3 cms

TCD 46.0 mms

AC 31.7 cms

FL 6.7 cms

TL 6.0 cms

HL 5.8 cms

It says ‘all long bones correspond to about 33–34 weeks’

That comment makes me worried. Your replies are most welcome”

“… … …. i went for my 16 weeks u/s and the report says echogenic bowel. has anyone else also got this in their u/s report???????? i have no idea what is this …. …..”

3.2. Image interpretation

A high percentage of women (20%) posted an image they received from their ultrasound exam to ask questions about the image, such as the baby’s gender (69%), an explanation of a vague shape they see in the image, or a location of a certain fetal body part (31%). Some of the questions expressed anxiety about the fetus’s development status.

“… … … I will be seeing an OB/GYN for the first time next month, so in the meantime I’m left to worry about my baby. One thing I know from the research I’ve done is that black areas on the 2D ultrasound indicate fluid, and fluid at the back of the neck/spinal cord can mean issues. To me it looks like there’s fluid in my baby’s neck, but I’m unsure. I’m also worried it doesn’t have enough room in there. To me there also seems to be something strange about his mouth/chin relationship? … ….. Can someone let me know what they can gather from my photos?”

3.3. Result explanation

We defined result explanation as an explanation of a condition or disease that a health care provider detected after the ultrasound exam. a lot of women want the result they received tobe explained by their peers (20.91%). There subthemes emerged form this theme. First, subtheme is the gestational age (39.82%) where we found a lot of women are confused about the difference of gestational age between last menstrual period and ultrasound exam, and some of them are even concerned about the differences even if it is one week. Second subtheme is the disease and conditions with women asking questions about conditions or diseases their ultrasound detected in the fetus or the mother (31.85%). These results were often communicated with a health care provider. Third subtheme is questions about Presence and/or absence of gestation sac, fetal pole, and heart beat (28.31%)

“Has anyone had an ultrasound and they told you the due date was off by 8 or more days?

I had one last week (20 wks preg.) and they told me that i would be due 8 days after my original due date. … …..Just curious if an ultrasound can be trusted this late in pregnancy or if it’s possible for the baby to just be light in weight ….has anyone experienced this?”

“… …. ..I had my 20 week ultrasound last week and was detected with this condition. Ever since I have been reading horribly scary stuff on internet about VCI. I would really like to speak with someone who had this condition and delivered a perfectly normal healthy baby …. ….

Please do share your experience if you had similar condition”

3.4. Safety of ultrasound exam and questions before the exam

Women asked for general information about ultrasounds, such as whether ultrasounds are safe for the baby (18.39%). They might refrain from doing the exam to avoid any harm it may cause to the baby. Their questions about safety of the exam range from the safety of ultrasound beam (16.25%), the safety of doppler exam (21.25%), and the safety of virginal ultrasound (17.5%). They also ask general questions such as when to do an ultrasound exam (5.74%), how to prepare for the exam (5.52%), what to expect from the exam (7.81), and a healthy lifestyle during pregnancy (1.37%).

“ …. .I want to minimize ultrasound exposure especially early on- unless there’s an emergency I’ll only be getting the 20-week anatomy scan. I want to limit Doppler use too …. .”

“ …. how many ultrasounds did you have during pregnancy and at which weeks??”

3.5. Negative emotions

In the majority of threads, women expressed negative emotions, such as being worried, confused, anxious, depressed, sad, or tense about different aspects of the ultrasound (26.20%). We coded a high percentage of negative emotions distributed among subtopics as shown in Fig. 2. For example, a woman was anxious about a certain measurement she could not understand in her report, and another woman was confused about an image she could not comprehend.

Fig. 2.

Percentage of Subthematics topics.

3.6. Lack of communication

In the analysis, we found complaints about poor communication with health care providers, which causes the mothers or family members to be anxious or worried and seek others opinions (3.44%). The example below shows how a pregnant woman went to the emergency room after not getting enough information from her doctor about having a low fluid level.

“… … …..fluids were low I’m not sure but he freaked me out and told me i need to have another ultrasound in 2 weeks. I left the doctors officer and took matters in to my own hands and went in to the E.R after 7 hours of getting nowhere with them they told me they wouldn’t be checking my fluids all they had down was hearing the baby’s heart and a mini ultrasound but it didn’t show how low fluids were .my baby’s heart rate has always been really good and he is always moving on the ultrasound …. .”

“… … … … My doctor has received the results yet hasn’t bothered to call me. I had a look online and I just need a second opinion atm. What can you tell from these images?”

Out of 435 threads, 96 mentioned which trimester the woman was in. The majority of women who disclosed this information were in the second trimester of their pregnancy (9.42%), followed by the first trimester (7.81%) and the third trimester (5.05%). This could be because most of the women in their second trimester were undergoing a detailed ultrasound exam called the anomaly scan. Further, the second trimester is when the baby’s gender can be identified. Hence, women might encounter a lot of information that they struggle to understand, and they may turn to social media to find answers. Most of the women in their first trimester asked questions about the absence or presence of a detectable heart rate, fetal pole, or gestational sac or expressed confusion about gestational age.

4. Discussion

An obstetric ultrasound is the first-line imaging modality used in pregnancy. In this study, we understand information needs and gaps of obstetric ultrasound exam. We collected the data from Yahoo!answer before the announcement of shutting down the website by May 2021, We used other websites to collect data as well, from which we observed that they cross validated each other. The results showed that it is critical to provide adequate information to patients regarding the ultrasound exam. Many factors lead women to seek explanations of their ultrasound exams on social media.

4.1. Inadequate information and report release time

In different studies, women expressed their needs for more detailed information from their health care providers [4,5,18–21]. A balance between detailed and necessary information is important to avoid ambiguities and unnecessary anxiety. In addition, it maybe difficult for women to remember and comprehend all the information provided in a visit [20,20] This could be one of the reasons women seek further information online. In a study conducted to explore Parental experiences of prenatal whole exome sequencing (WES) in cases of ultrasound diagnosed fetal structural anomaly, the parents preferred to have as many information as possible in different format and “appreciated receiving clinical details in written format relating to the specific anomalies identified” [20]. Therefore, it is important for clinicians to provide written and verbal information to patients during the consultation, and access to a patient-friendly ultrasound report as soon as possible after the appointment, to help reduce patient uncertainty in the period immediately following the consultation.

Additionally, the time between the clinical visit and the release of the patient’s report may lead women to seek outside opinions. In a study conducted to explore pregnant women’s experiences of received information in relation to fetal malformation detected on an ultrasound, most women thought the time between the first examination and second verifying ultrasound examination was too long, giving them ample opportunity to seek information online. The information they found online gave a sense of security or insecurity, depending on what they learned [14].

4.2. Difficulty understanding obstetric ultrasound notes and images

The growth of e-health, including the development of electronic medical records and the easy access of information by both health care providers and patients, has become an integral part of today’s health care [7]. Multiple health care facilities provides a web portal with different functionalities and features, and most patient portals allow patients to email their health care providers and make appointments and allow providers to provide electronic fillings of medication and make clinical reports accessible. However, making medical reports available to patients through the patient portal may lead to misinterpretation of the information provided due to the complexity of medical terminology and knowledge gaps [21]. Health care providers have not fully addressed the issues of readability and comprehension of medical reports for health consumers when accessing patient portals. In a study conducted to measure the readability of radiology reports, researchers found that almost all radiology modalities do not meet the recommended patient readability guidelines indicating that he the radiology reports are difficult for patients to understand [22].

In this study, we found that patients asked about different medical terminologies they could not understand in their obstetric ultrasound report. It is recommended that materials written to patients be at or below the 4th to 6th grade reading level [22]. The content of an obstetric ultrasound report exceeds the average reading level, which may lead patients to seek other opinions about their report. Technological advancements such as Natural Language Processing Allow providing patient-friendly definitions of medical terminologies which will enhance patients’ understanding and readability of a medical report.

In addition, Interpretive numeracy is defined as “the ability to understand the strengths and limitations of numbers to represent health or disease states, the efficacy of an intervention, or other expected health outcomes.” [23] Patients may misinterpret the numeric data available in their report. In this study, we found that parents often struggled to comprehend measurements that appear in obstetric ultrasound reports. This issue was reflected in 4.59% of the posts we examined. Common numeral results in the obstetric ultrasound report include fetal parameters, heart rate, cervix length, amniotic fluid index, and estimated fetal weight. We found these measurements are often asked about on social media. We recommend that the obstetric ultrasound exam provide an intuitive indicator to show whether the measurements are normal. This will eliminate some confusion and make the report easier for patients to comprehend.

Furthermore, medical images in the obstetric ultrasound exam are important to many pregnant women. In some studies, obstetric ultrasound images were correlated with a strong psychological effect in pregnant women because seeing the fetuses in the images helped them form stronger emotional bonds with their babies [24]. Despite this, little work has been done to help patients understand their radiology imaging information [25]. In this study, we found many parents posted their obstetric ultrasound images online to ask for further interpretations of the image. With technological advancement, an image processing module could be developed within the patient portal system to enhance the representation of imaging information. For example, in a research study for brain MRI reports including notes and images, a portal used an image processing module and natural language processing module to explain MRI images and reports [25].

4.3. Need for information before conducting the obstetric ultrasound exam

A systematic review of women’s views of pregnancy and ultrasounds conducted in 2008 mentioned, “Women’s early concerns about the safety of ultrasound [exams] were rarely reported in more recent research.” [26] However, in this study, we found that women are still asking about the safety of ultrasound exams or refrain from having an ultrasound exam to protect their babies from any harm the procedure might cause. The women’s poor knowledge about the safety and purpose of an ultrasound aligns with findings in other research studies [8,26]. Therefore, providing a more thorough explanation about the safety and purpose of the exam and how to prepare for the exam is needed to prevent misunderstanding and to ensure they do not miss out on an important diagnostic procedure.

Alongside questions about obstetric ultrasounds, some women (1.37%) asked about how to maintain a healthy lifestyle during their pregnancies. Expanding this research to examine all questions women ask during their pregnancy may reveal more questions women ask about how to maintain a healthy lifestyle, but this is outside the scope of this study. However, it is important to provide pregnant women with health management resources to help them adhere to a healthy lifestyle and avoid unfavorable birth outcomes. The AMA and the U.S. Department of Health and Human Services recommend writing patient education materials at or below the seventh-grade reading level [27]. We recommend adding information to the medical report that will increase women’s knowledge about how to maintain a healthy lifestyle and a healthy pregnancy.

5. Conclusion

In this study, we found that many women seeking information about ultrasound exam online because of poor provision of the information, difficulty remembering what was said during the office visit, or difficulty understanding the radiology report. It is crucial to provide pregnant women with enough clear information since they are prone to high anxiety levels if they are uncertain about their pregnancy, which may negatively affect the pregnancy outcome. We noticed that the obstetric ultrasound report needs substantial improvement. We recommend using technological advancements to provide a patient-friendly report that contains easy-to-understand information. Filling this gap by improving obstetric ultrasound reports will allow pregnant women to easily find credible information. This may improve the quality of care and increase women’s satisfaction with the exam.