Women's decisions about maternal serum screening testing: A qualitative study exploring what they learn and the role prenatal care providers play
Article Outline
- Summary
- Introduction
- Literature review
- Methods
- Results
- Discussion
- Conclusions
- Acknowledgements
- References
- Copyright
Summary
Background
Maternal serum screening (MSS) is a blood screening test that detects fetuses with an increased risk for open neural tube defects, Down syndrome and Trisomy 18. Although most physicians offer MSS to their patients, discussions about the test are brief, usually lasting less than 5
min.
Research problem
The short duration of these discussions raises questions about the quality of information women receive and whether their screening decisions were well informed. This article describes what women learn about MSS and from which sources, and the role of their physician in their decision to have MSS.
Participants and methods
We conducted qualitative interviews with nine pregnant women from Newfoundland and Labrador. Interviews were recorded, transcribed verbatim, and analyzed using thematic coding.
Main findings
Women rely on multiple sources of information to learn about MSS, including prenatal health care workers, the Internet, and other mothers. Although physicians are influential in women's MSS decisions, they may not provide vital information about options in the event of a positive test.
Discussion
Unlike the scientific and medical communities which place greater value on rigorous, peer-previewed evidence based on research, women place greater value on information gleaned from more informal, accessible sources such as family, friends and the Internet. Prenatal care providers can aid women by directing them to credible sources of information and engaging in timely discussions about MSS.
Conclusions
Understanding where women learn about MSS and how they make their decisions about testing sheds important light on the roles prenatal care providers should play.
Keywords: Maternal serum screening, Prenatal testing, Decision-making
Introduction
Previous studies in Newfoundland and Labrador (NL), Canada's easternmost province, found that while most physicians offer maternal serum screening (MSS) to their patients, discussions about the test are brief, usually lasting less than 5min.1, 2 Given the short duration of these discussions, we wanted to know: are women's screening decisions well informed? What and from which sources do women learn about MSS? What role do women's prenatal care providers play in these decisions? Using qualitative interviews with expectant women from NL, this article describes what women learn about MSS, and the role of their physician in their decision to have MSS. We also highlight steps all prenatal care providers can take to help women make informed decisions about MSS.
Literature review
MSS is a blood screening test that detects fetuses with an increased risk for open neural tube defects, Down syndrome and Trisomy 18. The test measures three biochemical markers: alpha-fetoprotein, human chorionic gonadotropin and unconjugated estriol. These serum markers, in combination with maternal age, are used to provide a risk estimate of an unborn child having such a birth defect.3, 4 In NL, MSS is presently offered to women during their second trimester of pregnancy.
In 1994, the Canadian Task Force on Periodic Health Examination, and more recently, the Society of Obstetricians and Gynaecologists of Canada recommended that all pregnant women should be offered MSS.5, 6 The Provincial Medical Genetics Program of NL introduced the MSS Program to provide a risk estimate for every pregnancy in the province. Despite the implementation of the MSS Program in NL, the utilization rate of MSS is much lower in NL than other provinces in Canada.1, 2, 7 Approximately 22% of pregnant women in NL have MSS,1 compared to 48% in Ontario8 and 71% in Manitoba.9
The focus of current international public policy has shifted from increasing the utilization of MSS to ensuring that women make well informed decisions.6, 10 A recent study of women in Australia found that only 37% of women made informed choices about MSS10 In recent studies in NL, researchers found that most MSS discussions lasted less than 5min.1, 7 Given the brief duration of the discussions, we wanted to examine whether women made informed decisions about their MSS and the role of their physician in these decisions. While a number of different professions, including midwives and public health nurses, may be involved in prenatal care in NL, only physicians can disclose testing results. Therefore, we specifically chose to focus on the physician's role in women's MSS decision making in this study.
Previous studies suggest that the information provided by physicians, the manner in which information is provided as well as the physician's personal attitudes and beliefs can influence women's decisions.11, 12 Researchers have identified three models of decision making to describe the patient–physician relationship and the degree of patient participation: the paternalistic model (physician led discussion and decision of treatment care and options), the shared decision-making model (patient and doctor share in all stages of the decision with a two way exchange of information) and the informed decision making model (information is given to the patient and the decision is made solely by the patient).13, 14, 15 We used this typology to describe how women made decisions about MSS testing.
Methods
The Memorial University of Newfoundland Human Investigations Committee approved this study. We conducted informant telephone interviews between July and November 2005 with NL women in their 21–26th week of a single birth pregnancy. Participants were recruited through prenatal educators and coordinators affiliated with the NL Provincial Perinatal Program. Recruitment took place in prenatal and public health clinics as well as baby clubs in the sites across the province. The prenatal educators and coordinators informed women attending these sites of the study as well as its purpose and forwarded the names and contact information of interested women to us. We then contacted the women, gained consent and conducted interviews by phone.
To be eligible for the study, women had to be in their 21–26th week of pregnancy; 19 years of age or older, carrying a single fetus, and able to understand and speak sufficient English to answer the interview questions. The gestational age of 21–26 weeks was chosen since it is just after the MSS cut-off point and women were most likely to remember which tests they agreed to and why. Only women with singleton pregnancies were recruited because MSS and other prenatal screening vary for multiple pregnancies.2 Participants were recruited from each of the health regions in the province including urban and rural communities to ensure that we would capture access to service issues (which may influence rural women's MSS decisions) as well as explore regional differences. We also wanted to capture women of all ages since previous Canadian studies have shown that MSS use varies significantly by maternal age.1, 7, 8 Both women who had had MSS and who had not had MSS were interviewed and recruitment continued until saturation was reached (no new themes emerged).16
The names of 11 women were forwarded to our research team, among whom we conducted interviews with 9 women. We did not interview the two other women because they were more than 26 weeks pregnant.
Using a semi-structured interview guide, we first asked questions about the participant's personal background and demographic information. We then asked about sources of prenatal information and the topics of such information, and finally knowledge of MSS, counselling experiences with physicians and other prenatal care providers, reasons for having or declining MSS, and MSS testing in other pregnancies. For women who had MSS, we also inquired about the experience of testing, notification of results, etc. Interview questions were revised slightly as the interviews progressed and certain themes were explored more in depth. Interviews lasted between 45 and 60min.
Interviews were tape-recorded and transcribed verbatim. Pseudonyms were used for each informant (and are presented in this article). A thematic analysis approach was used to analyze the transcripts.16 Data collected were continuously compared to previously collected data to identify concepts, categories, clusters and themes. With the exception of themes related to decision-making, themes were derived from the data. Themes to capture decision-making were imposed based on models identified in the literature (specifically the paternalistic, shared and informed decision-making models).13, 14, 15 Both authors independently read each transcript, identified key words and emerging themes, and developed a coding scheme and analysis template.16, 17 Any discrepancies in coding were resolved through consensus within the research team, creating new themes or integrating ideas within a theme when necessary. The transcripts were coded using NVivo 7 software.
We adopted a number of measures to enhance the credibility of our data and analysis. First during the interviews, we used a form of member checking with the participants by summarizing responses and reporting them back to the participants to verify that that their responses had been accurately interpreted.18, 19 By developing the coding template as a team and independently coding and then comparing the first set of interviews, we had an opportunity to clarify misunderstandings and to ensure consistency of coding.17 We also searched for negative cases and alternative explanations throughout the analysis process. We kept detailed records of the interviews (transcripts and audiotapes), field notes (including our own emerging impressions and views), and minutes of analysis meetings throughout the data collection and analysis.19 Finally, we provide a rich description of the context in which we collected and analyzed the data to provide others with sufficient information to apply these findings in similar contexts.20 A preliminary draft of the manuscript was reviewed by both authors, offering the opportunity to ensure that our interpretations were based on the data rather than our personal viewpoints.
The nine interview participants ranged in age from 21 to 35 years of age, were married or common-law (in de facto marriages), saw a family physician or general practitioner for their pregnancy care (two women were also seeing an obstetrician), and were told about MSS by their physician (Table 1). The majority of women were having their first child. Three women had MSS and six did not have MSS.
Table 1. Demographic characteristics of interview participants (total=9).
| Characteristic | Had MSS (n=3) | Did not have MSS (n=6) |
|---|---|---|
| Age | ||
| 20–25 | 1 | 2 |
| 26–30 | 1 | 2 |
| 30–35 | 1 | 2 |
| Parity | ||
| 0 | 2 | 3 |
| 1 | 1 | 2 |
| 2 | 0 | 1 |
| Marital status | ||
| Married/common law | 3 | 6 |
| Region of residence | ||
| Labrador-Grenfell | 2 | 2 |
| Western | 1 | 0 |
| Central | 0 | 2 |
| Eastern | 0 | 2 |
| Health professional seen for carea | ||
| Family physicians/general practitioner | 3 | 6 |
| Obstetrician | 0 | 2 |
aAdds to more than nine because some saw more than one physician. |
Results
Sources of MSS information
Women in our study relied upon multiple sources of information to learn about MSS including trained health care professionals (“I would say would be my GP and just sort of general reading”), prenatal pamphlets (“And like I said the pamphlets…”), and information from healthy baby clubs/prenatal classes (“from the healthy baby club… I learned a lot of information from them”). Women also relied on books, the Internet (“I look on [the internet] if I needed any answers or anything like that”); and on-line chat rooms (“And I’ve also been sort of following an online discussion board of just, you know, moms that are due around the same time I am”). They also learned about MSS from family and friends (“Well, actually, my cousin was telling me that one of her good friends had that same test done”), their own personal experiences from past pregnancies (“Well, I learned a lot through my daughter. She was just born last year. So, it's still quite fresh in my mind when I was pregnant with her”) and, for women who were also health professionals, their vocational training. Women in our study reported actively seeking information to guide their decisions:
Sue: So, It's just a lot of self education and just talking to other moms around that have recently had babies…
Donna: I mean before I actually, you know, decided to have or not have tests, you know, I checked into it extensively… So, I decided then, well, of course I discussed it with my husband, … But, ah, I mean he was well read on it as well. So, like I said, it wasn’t something we did lightly. We put a lot of thought and a lot of effort into finding out about it.
The manner in which women in our study learned about MSS (use of multiple sources, reliance on personal connections) was consistent with the way they learned about other aspects of their pregnancy.
Preferences for MSS information sources
Although they believed it was important for physicians to provide information, the women in our study placed particular value on what they learned from family and friends about pregnancy in general and MSS specifically. For example, Brenda, who was from a small community and having her second child, noted the importance of speaking to other women who are going through or have gone through a similar experience:
Interviewer: Did you feel you had enough information to really make the decision?
Brenda: From [my GP]? Probably no. Not in that, just in that short time you have with him, I guess. But, um, after talking to my friends and stuff, I had more information there.
Information about other women's experiences with MSS was often cited as an important factor in women's decision to either have or not have the test:
Clare: Well, actually, my cousin was telling me that one of her good friends had that same test done and it came back that her baby was going to have spina bifida and Down's syndrome. So when the doctor mentioned it to me, do you want to have this test done, I said yes because I really wanted to know.
Juanita: The one thing that kind of influenced me was my sister had lost a baby last year.
What women learn (and do not learn) about MSS from their physician
All of the women we interviewed were told about MSS by their physician, but many felt they needed additional information to make their decisions and identified specific topics that were not discussed. For example, all women we interviewed were aware that it was a blood test, it screened for certain birth defects, and it could not tell for certain that a child had a birth defect.
Sue: And, you know, she[her physician] basically said what it would detect and what it would not detect and sort of how it would be used. That it's not sort of a diagnostic test, as such. It's sort of a getting a likelihood of, you know, a child having a defect or not. And that it would be followed up by other tests and that sort of thing.
However, most women in our study were not told by their doctor about their options if they had an affected child:
Juanita: I just, well we had that maternal screening done. [My doctor] just told me what week to do that on. And she told what, you know, it involves. If it comes back, it could come back, you know, with the possibility of Down's syndrome or you know whatever that goes with the maternal serum screening… Just basically that you’ll have to get a blood test done on the seventeenth week and they’ll send it off and check to see if you, if the baby has any birth defects of Down's syndrome or whatever.
Interviewer: Did she mention prior to you having the test about what sort of options you had if it came back that you did have a high risk for Down's syndrome, for example?
Juanita: No, she did not.
Interviewer: When your doctor told you about testing and that sort of thing, did he go over what your options would be if you had a positive result?
Cindy: No.
Interviewer: Did he mention anything about termination, preparation-?
Cindy: No.
Options in the event of a positive case (verified with additional testing) include termination of the pregnancy, or education and preparation for a child with a particular disorder. The lack of information given on options in the event of a positive screen is noteworthy given that the decision to have the test was often based on these options. For example, Brenda, who opted for the test cited preparation as her reason for having the test:
Brenda: Then, I guess after talking to another girl that I, that's pregnant also and that she was doing it, it just, I guess you just realize it's better to prepare for something just in case… Um, I guess just to be more prepared in case something was wrong.
Cindy said it was her unwillingness to consider terminating her pregnancy that convinced her not to have MSS testing:
Cindy: So, I kind of decided that I wasn’t going to terminate the pregnancy; I wasn’t going to abort the pregnancy. So, I didn’t really see the need to have the test done when that wasn’t an option for me…
MSS decision-making styles
The manner in which physicians presented information about MSS also influenced the decisions women in our study made decisions. For example, some physicians wanted all their patients to have the test:
Brenda: He, well he more or less wanted me to, but he said it was my choice if I didn’t do it then it was up to me.
Interviewer: Okay. Any particular reason he gave for that?
Brenda: That he wanted me to?
Interviewer: Yeah.
Brenda: No, I think he just said that he wanted, he has all of his patients do it.
One woman we interviewed was not given a choice, but rather told by her doctor that she needed to have a MSS test done.
Interviewer: Did [your doctor] offer it to you? Did she give you a choice of whether or not to have it?
Juanita: She just told me to go and get a blood test done. She told me, she never gave me no option or anything. She kind just told me to do it, that's all.
Other women in our study reported that their doctor was not confident in the value of the test (“And honestly I don’t know if some doctors have a lot of faith in the test either”) and while not instructing them not to have the text, their opinion persuaded them not to have the test:
Cindy: [The doctor] never kind of went into it. He just said, it's not that I’m advising you to have, he said, I’m giving you the information and I want you to make a decision on your own … he kind of stressed the importance of making a decision but he didn’t come out and said I advise you to have it. If he advised me I might of, you know, more or less done it. But he never really advised it…
Discussion
The women interviewed in this study relied on multiple sources to learn about MSS. In many instances, they relied upon personal communications with friends and family as well as the Internet. Often, these sources had greater influence on their MSS decision than the information given by health care workers. Unlike the scientific and medical communities which place greater value on rigorous, peer-reviewed evidence based on research, the women in our study placed greater value on information gleaned from more informal, accessible sources. These sources may allow them to interpret evidence within their own personal experiences. Root and Browner, drew similar conclusions in their qualitative study of women's prenatal health care.21 They noted that prenatal knowledge is derived from multiple sources and situated by the context in which the knowledge is practiced and has meaning for individual pregnant women. Given women's reliance on the Internet and other resources, prenatal care providers should scrutinize available information and encourage women to access credible sites and sources.
Our study confirms that physicians remain an influential yet incomplete source of information about MSS. The majority of studies on patient knowledge that were reviewed noted the poor level of knowledge that women had about prenatal tests.10, 11, 12, 22, 23, 24 In particular, a number of women we interviewed reported that they did not understand the options available to them if they had a positive result. Given that these options were often cited as the basis to have or not have the test, our study highlights an important gap in the information given to women about MSS.
We found that when making decisions about MSS, the women in our study and their physicians used a range of decision-making styles. The paternalistic decision-making model was seen in the case where the physician told his patient that she needed to have the test. Other studies report similar findings that some physicians order MSS automatically as part of routine blood work or without the agreement of patients.9, 11, 22 This practice is of ethical concern, as informed consent is not obtained. A number of women used informed decision-making and made her decision with little or no discussion with the physician. The shared decision-making model, though perhaps not in its purest form, was present as women discussed preferences with the physician prior to a decision being made. However, given the relatively short time period in which MSS is discussed (usually one appointment), the time needed to support shared decision-making fully may not be available.
Prenatal care providers should recognize that MSS knowledge varies greatly among women. In addition, each woman may prefer a different model of decision-making. These results suggest that prenatal care providers should not take a “one-size-fits-all” approach to MSS counselling as parents may need differing amounts of time and information given to them during the counselling session. A previous Canadian study found that women want to learn about MSS in an unbiased and non-judgemental manner.11 Prenatal care providers should be aware that they play an influential role in MSS decisions, and that their own knowledge and perceptions about MSS can sway women's decisions. Ongoing continuing education is encouraged to educate prenatal care providers, about the test as well as appropriate ways to present information about MSS and other prenatal screening tests.
Lastly, prenatal care providers should recognize that women do not make decisions about MSS over the course of a single prenatal visit. In addition to taking the time to educate themselves, women want to discuss the test, as well as options in the event of a positive test, with their social networks.11 Prenatal care providers should raise MSS testing sufficiently early in pregnancy to allow women to learn about and discuss testing to ensure that their decisions are informed.
Study limitations
Our qualitative sample included only women who had partners, which may limit our findings. Moreover, all the women in this study had heard of MSS; this may be due to the recruitment method in which women who had not heard about MSS would be less likely to agree to an interview where MSS was the focus. This may also explain the high level of knowledge women had about MSS. Moreover, since our sample was not random, our study is limited by participant self-selection. In addition, recruitment bias may extend to the nurses who engaged potential participants. The interviews also required self-reported responses; thus there is a risk women gave responses that they felt they “should” (socially, morally, ethically) give, not necessarily their actual opinions or decision-making processes. We interviewed women from one province in Canada. Although study participants came from both urban and rural communities, the unique aspects of the province's health care system may also limit the transferability of our findings to other jurisdictions.
Conclusions
Understanding where women learn about MSS and how they make their decisions about testing sheds important light on the roles that prenatal care providers should play in order to fulfill the needs of women in their care. Women seek out information about MSS from multiple sources. Prenatal care providers can help women make informed decisions by directing them to credible sources of information, engaging in timely discussions and fully disclosing available options in the event of a positive test result.
Acknowledgements
Amanda Park held a masters fellowship from the Atlantic Regional Training Centre funded by the Canadian Health Services Research Foundation/Canadian Institutes of Health Research. Maria Mathews holds a New Investigator's Award from the Canadian Institutes of Health Research (Regional Partnership Program).
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PII: S1871-5192(09)00025-0
doi:10.1016/j.wombi.2009.01.005
© 2009 Australian College of Midwives. Published by Elsevier Inc. All rights reserved.