Decisional conflict among couples seeking specialty treatment for infertility in the USA: a longitudinal exploratory study

Abstract

STUDY QUESTION

What are couples’ decisional conflicts around family-building approaches before and after seeking a specialty consultation for infertility?

SUMMARY ANSWER

Decisional conflict is high among couples before an initial specialty consultation for infertility; on average, women resolved decisional conflict more quickly than men.

WHAT IS KNOWN ALREADY

Couples have multiple options for addressing infertility, and decisional conflict may arise due to lack of information, uncertainty about options and potential risks or challenges to personal values.

STUDY DESIGN, SIZE, DURATION

We conducted a total of 385 interviews and 405 surveys for this longitudinal, mixed-methods cohort study of 34 opposite-sex couples who sought a new reproductive specialty consultation (n = 68), who enrolled before the initial consultation and were followed over 12 months.

PARTICIPANTS/MATERIALS, SETTING, METHODS

The in-depth, semi-structured interviews included questions about information gathering, deliberation and decision-making, and self-administered surveys included the Decisional Conflict Scale (DCS), at six time points over 12 months. A DCS total score of 25 is associated with implementing a decision, and higher scores indicate more decisional conflict. A systematic content analysis of interview transcripts identified major themes. Paired t tests identified differences in DCS between women and men within couples. Linear mixed models predicted changes in DCS over time, adjusting for sociodemographic and fertility-related factors.

MAIN RESULTS AND THE ROLE OF CHANCE

The major qualitative themes were communication with partners, feeling supported and/or pressured in decision (s), changing decisions over time and ability to execute a desired decision. Average DCS scores were highest before the initial consultation. Within couples, men had significantly higher decisional conflict than women pre-consultation (48.9 versus 40.2, P = 0.037) and at 2 months (28.9 versus 22.1, P = 0.015), but differences at other time points were not significant. In adjusted models, predicted DCS scores declined over time, with women, on average, reaching the DCS threshold for implementing a decision at 2 months while for men it was not until 4 months.

LIMITATIONS, REASONS FOR CAUTION

This is a convenience sample from a single center, and generalizability may be limited.

WIDER IMPLICATIONS OF THE FINDINGS

Understanding how couples discuss and make decisions regarding family-building could improve the delivery of patient-centered infertility care. Our findings are the first to prospectively explore decisional conflict at multiple time points in both men and women; the observed gender differences underlie the importance of supporting both partners in clinical decision-making for infertility.

STUDY FUNDING/COMPETING INTEREST(S)

This work was supported by the National Institute of Child Health and Human Development under Grant [R21HD071332], the Research and Education Program Fund, of the Advancing a Healthier Wisconsin endowment at Medical College of Wisconsin, the National Research Service Award under Grant [T32 HP10030] and the use of REDCap for data collection from the National Center for Advancing Translational Sciences, National Institutes of Health under Grant through [8UL1TR000055]. The authors have no competing interests.

Introduction

Infertility refers to a couple’s inability to become pregnant after 12 months of regular unprotected sexual intercourse (Zegers-Hochschild et al., 2009). In the USA, ~7 to 16% of reproductive-aged women find it difficult getting pregnant or sustaining a pregnancy within 12 observed months or cycles of trying (Thoma et al., 2013). Globally, the prevalence of infertility is estimated to be about 9%, of whom about half seek medical care for infertility, but only about 22% actually receive care (Boivin et al., 2007). Most people seeking to have a child do so as part of a couple, and couples who wish to but cannot conceive face difficult decisions. For those who pursue medical treatment to resolve infertility, fertility treatments and outcomes have been published that can help in counseling infertile patients (Benedict et al., 2016; Daniels, 1994). However, less is known about how patients seek and incorporate information and how they make decisions about family-building in collaboration with their partners, their health care providers, and others.

Extant studies on decision-making in infertility have examined patient decisions about how many embryos to transfer in in vitro fertilization (IVF) (Gillett et al., 1996; Johnson and Johnson, 2009), the disposition of unused frozen embryos (Lyerly et al., 2006, 2010) and whether people using donor gametes plan to disclose their children’s genetic origins (Herberger et al., 2007; Shehab et al., 2008). Others have looked at the decision to discontinue pursuit of IVF (Peddie et al., 2004; Rajkhowa et al., 2005; Verberg et al., 2008; Brandes et al., 2009). A systematic review of predictors for discontinuation of fertility treatment identified postponement of treatment, psychological burden and organizational- and clinic-related problems as related to discontinuing infertility treatment (Gameiro et al., 2012). Both postponement of treatment and psychological burden may be related to the decision-making process. Previous studies have been inconsistent with regard to gender differences in preferences for adoption or living child free (Braverman and Corson, 1995) and acceptance of donor gametes or donor embryos (Eisenberg et al., 2010; Banerjee and Singla, 2018).

Research in this field is often based on retrospective reports or comes from the perspective of only one partner, typically the woman seeking to become pregnant. Studies of couples experiencing infertility have examined differences within couples in coping (Peterson et al., 2006), infertility-related psychological distress (Pottinger et al., 2006), pre-post fertility-treatment distress (Schmidt et al., 2005) the effect of infertility on marital communication and adjustment (Pasch et al., 2002) and alignment of couple’s priorities for family-building (Duthie et al., 2017a). However, many unknowns remain regarding how couples considering treatment for infertility make decisions about family-building, including changes over time, especially before and after an initial consultation with a reproductive specialist.

Decisional conflict refers to the uncertainty about a course of action to take, which arises when competing options involve potential risk, regret and/or challenges to personal life values (O’Connor, 1995). During infertility, decisional conflict may be influenced by insufficient knowledge, inadequate support, unclear values and pressures both internal e.g. ‘biological clock’ as well as external e.g. family, societal or financial pressures. In particular, tension could arise during joint infertility decision-making due to uncertainty about the type and cost of medical treatments, differences in preferences for how to resolve infertility and the quality of a couple’s relationship (Svanberg et al., 2001). The Decisional Conflict Scale (DCS) is frequently used in evaluations of patient decision aids for shared decision-making (Kryworuchko et al., 2008), such as measuring decisional conflict in patients with cancer faced with fertility preservation decisions (Mersereau et al., 2013; Chiavari et al., 2015; Kim and Mersereau, 2015; Benedict et al., 2016, 2018; Müller et al., 2018), in women making decisions regarding elective oocyte cryopreservation (Kim et al., 2018), elective abortion (Ralph et al., 2017) and invasive prenatal testing (Caleshu et al., 2010); in men regarding sperm banking (Huyghe et al., 2009); and among patients regarding the disposition of cryopreserved embryos after in vitro fertilization (IVF) (Lyerly et al., 2011). It has not been studied among couples who are early in the process of exploring specialty treatment for infertility. The emotional and financial burdens associated with infertility treatments frequently lead to treatment drop out (Rich and Domar, 2016); therefore, it is clinically relevant to understand decisional conflict around family-building in order to optimize timely, patient-centered care. In this longitudinal, mixed-method cohort study, we explored decisional conflict regarding family-building among couples before and after seeking a new specialty consultation for infertility. We also modeled the DCS of men and women within couples at six time points over 12 months.

Materials and Methods

Participants

A convenience sample of couples was recruited from a reproductive medicine clinic at a large, Midwestern academic medical center. From May to November 2013, letters detailing the research study were mailed to new patients who had scheduled a consultation with a reproductive specialist and met preliminary criteria: an address within 30 miles of the center, a partner who had not already been contacted about the study and a first-consultation date at least 1 week in the future. Seventy-nine patients were screened by phone for eligibility: no previous children conceived using medical assistance, comfort communicating in English and ability for them and their partner to meet in-person for an interview before their first appointment with the reproductive specialist. Fifty-nine patients were eligible, and 41 patients and their partners enrolled in the study. Following the first data collection point, one couple withdrew from the study, and three couples were removed because of language barriers or difficulties with scheduling. The remaining 37 couples continued their participation in the study for the 12-month duration. In the current analysis, we focus on the 34 opposite-sex couples who were not pregnant at the initial consultation.

Procedure

All participants provided written informed consent at the time of enrollment. The study was approved by the Institutional Review Board at the Medical College of Wisconsin. Each participant met with one of two trained interviewers at up to six time points over the course of 12 months: (i) within a week prior to the first scheduled consultation, (ii) within a week after the first consultation, (iii) after receiving test results if the participant had testing done, or about 2 months after the first consultation if no testing was done, (iv) 4 months post-consultation, (v) 8 months post-consultation and (vi) 12 months post-consultation. At each time point, participants completed an online self-administered questionnaire through REDCap, then participated in a semi-structured, in-depth interview, which was audio-recorded and transcribed. If couples were not currently making fertility-related decisions because of an ongoing pregnancy or completing an adoption, then they were only asked to complete surveys at the 2-, 4- and 8-month assessment points. To increase rapport, participants remained paired with the same interviewer across all six time points, and partners within a couple were not paired with the same interviewer. Interviews were conducted in a private room on the medical school campus and lasted about 1 h.

The interview guides and new survey questions were developed by the study team, representing expertise in reproductive endocrinology and urology, patient decision-making and qualitative and survey methods, as well as a patient experienced with IVF. The materials were then evaluated for face and content validity in cross-sectional pre-test interviews conducted with 17 patients (10 women and 7 men), recruited in the same way as participants for the main study, but representing all stages of fertility treatment rather than new consultations. Data collection materials were significantly revised based on participant feedback.

Measures

Interview guide

The semi-structured, in-depth interviews followed an interview guide customized for each time point. A wide variety of topics was covered across the six interviews, including reproductive history, desire for children, the consultation with the reproductive specialist, lifestyle changes, test results and outcomes. At every time point, interview guides included questions related to shared decision-making: (i) information gathering, (ii) communication with partner, (iii) perceived agreement with partner, (iv) whether there was anything the person was careful about sharing, (v) whether the person felt supported and/or pressured in family-building decisions and (vi) the family-building paths being considered and those that were pursued.

Decisional conflict

The self-administered questionnaire included the traditional DCS (version A), which assesses decisional conflict using 16 items across five subscales (O’connor, 1995). These include Informed (three items), Values clarity (three items), Support (three items), Uncertainty (three items) and Effective decision (four items). Each item uses a 5-point Likert response scale, and the total score ranges from 0 to 100, with higher scores representing more decisional conflict. Scores above 37.5 are associated with delaying decisions, while scores below 25 are associated with implementing decisions (O’connor, 1995; Légaré et al., 2012).

Importance of cost to family-building decision-making

The Family-Building Priorities Tool measures the relative priority of 10 different factors for deciding what options to pursue to try to have a child, for example, ‘that I become a parent one way or another’ and ‘that my child has my genes’ (Duthie et al., 2017a). We categorized importance of cost to decision-making as high when a participant ranked ‘cost’ among their top three priorities. We used this measure to represent the importance of cost to family-building decision-making.

Data analyses

We conducted a systematic content analysis of each interview transcript according to standard procedures for qualitative data analysis (King et al., 2018). Four members of the research team read interview transcripts from two couples after the first two time points and devised a preliminary coding scheme through an iterative process. Codes represented research topics of interest corresponding to specific sections in the interview guides (e.g. information gathering) as well as themes that emerged from the interviews (e.g. openness to any family-building paths). Thematic content analysis focused on identifying common themes related to decisional conflict across all interviews, and we also evaluated components of decisional conflict over time and examined how decisions changed over time. A formal codebook for team-based coding (MacQueen et al., 1998) was developed and maintained in MS Excel. We categorized participant responses according to the coding scheme in NVivo with regular team meetings to check reliability and consistency. We double coded >25% of transcripts. Discrepancies were resolved through discussion.

Quantitative analyses are presented stratified by gender. Paired t tests were used for differences in observed DCS between time points 1 and 2 as well as for differences in DCS between women and men within couples at each time point. Pearson’s correlation coefficients describe within couple correlations in total DCS. Predicted DCS was modeled separately for men and women using linear mixed models in order to examine changes over time while accounting for within-subject correlations. The models included data from participants at all time points at which they were not currently pregnant or parenting. We present predicted margins for each time point. Covariates included in the models were age, education level, having a previous biological child, importance of cost to family-building decision-making, time trying to conceive, infertility diagnosis (female, male and/or unexplained) and family-building paths pursued over 12 months. Paths included non-medical approaches (adoption or fostering) as well as medical treatments categorized as medications alone, intrauterine insemination (IUI) or IVF, and other treatments. Quantitative analyses were performed in STATA/MP 15.1.

Ethics

The Institutional Review Board at the Medical College of Wisconsin provided ethical approval. All study participants provided written informed consent at enrollment.

Results

With the 68 participants included in this analysis, we conducted a total of 385 interviews and 405 surveys, missing only 5 expected assessments (3 women and 2 men) among non-pregnant couples. Most participants were white, non-Hispanic (90%), with an average age of 34 years (Table I). The clinic population during the same time period was a bit older (39 years) with more racial/ethnic diversity (77% white, non-Hispanic). A few participants had previous biological children with a different partner; all couples were experiencing infertility together for the first time. Fourteen couples received a diagnosis of female infertility only, 1 couple had male infertility only, 9 couples had both male and female infertility and 10 couples had unexplained infertility or did not complete testing. Wisconsin state law does not mandate insurers to offer coverage for infertility diagnosis and treatment, and few couples had insurance coverage for infertility treatments. About one-fifth of men and nearly one-fourth of women ranked cost as a top priority for making decisions about family-building options.

Table I.

Sample characteristics.

	Total, n = 68		Women, n = 34		Men, n = 34
	n	%	n	%	n	%
Age, years mean ± SD	34.4 ± 7.0		32.7 ± 5.7		36.1 ± 7.8
Education
High school or less	9	13	3	9	6	18
Some college	9	13	3	9	6	18
College	29	43	15	44	14	41
Advanced degree	21	31	13	38	8	24
Race
Asian	3	4	2	6	1	3
Black or African American	4	6	2	6	2	6
White	61	90	30	88	31	91
Had prior biological child(ren)	-		4	12	1	3
Personal income (US$)
19 999 or less	-		4	12	1	3
20 000–39 999	-		11	32	7	21
40 000–59 999	-		9	27	10	29
60 000–99 999	-		7	21	14	41
100 000 or more	-		3	9	2	6
Missing	-				1	3
Importance of cost to family-building
High priority	15	22	8	24	7	21
Missing	1	2	1	3	0	0

Family-building paths and outcomes

More than three-quarters of couples pursued one or more paths to add a child to their family within 12 months after having made an appointment with a reproductive specialist. Six couples (18%) pursued non-medical paths (adopting or fostering a child) and 17 (50%) pursued IUI while 4 (12%) pursued IVF over the 12 months (Table II). We classified family-building outcomes at 12 months as ‘pregnant or parenting a new child’ if the couple was pregnant, had delivered a baby or had a child in home through adoption or foster care and ‘not pregnant or parenting a new child’ if they did not meet those criteria. With this definition, 56% of the couples were pregnant or parenting a new child at the 12-month assessment, though we note that three of the pregnancies reported at 12 months later resulted in miscarriage. Just over a quarter of couples at 12 months stated they were still trying to become pregnant, one couple was on an international adoption waitlist, two were planning to pursue foster care and three couples (9%) had dissolved their relationship. Table III summarizes the outcomes by family-building paths. Among the 34 couples, 12 (35%) were pregnant or parenting a new child as a result of medical treatments and 7 (21%) were pregnant or parenting a new child not as a result of medical treatments.

Table II.

Family-building paths and outcomes of couples.

	Total, n = 34
	n	%
Time trying to conceive, in months
Median (IQR)	18 (10–24)
Infertility diagnosis
Female factor only	14	41
Male factor only	1	3
Male and female factor	9	27
Unexplained	10	29
Family-building paths over 12 months
Non-medical approacha	6	18
Medications aloneb	6	18
Intrauterine insemination (IUI)	17	50
In vitro fertilization (IVF)	4	12
Other treatmentc	7	21
Family-building outcomes at 12 months
Pregnant or parenting a new child	19	56
Pregnantd	10	29
Live birth	7	21
Adopted a child	1	3
Fostering a child	1	3
Not pregnant or parenting a new child	15	44
Divorced/split	3	9
Still trying to become pregnant	9	26
International adoption waitlist	1	3
Planning to foster	2	6

^{a a}Non-medical approaches were adoption or fostering a child.

^{b b}This is couples who tried at least 1 cycle of fertility medications (e.g. clomiphene/letrazole) during the 12-month study period not in conjunction with other treatment such as IUI.

^{c c}This category includes varicocele surgery and procedures to remove uterine polyps/fibroids.

^{d d}Three couples who reported a pregnancy at 12 months later experienced a miscarriage of that pregnancy.

Table III.

Summary of family-building paths by outcomes of couples at 12 months.

	Total (n = 34)
	n	%
Not pregnant or parenting a new child	15	44
Tried medical treatments	9	26
Did not try medical treatments	6	18
Pregnant	10	29
As a result of medical treatments	7	21
Not as a result of medical treatments	3	9
Parenting a new child	9	26
As a result of medical treatments	5	15
Not as a result of medical treatments	4	12

Qualitative themes regarding family-building decision-making

The major themes regarding family-building decision-making were communication with partners about infertility, whether there was anything the person was careful about sharing, feeling supported and/or pressured in the decision(s), changing decisions over time and ability to execute a desired path.

At each interview, participants described their discussions with their partner about infertility and what paths (options) they were considering to build their family. Before the initial consultation, couples had not generally made any decisions yet and were seeking information and advice from the reproductive specialist. Over time, as decisions were made and paths pursued, fewer couples discussed family-building. Multiple men and women reported being careful about when or how to share their thoughts and feelings about infertility with their partner. For example, a 32-year-old man described being careful not to mention pregnancy when his wife was menstruating (and thus not pregnant), while his 30-year-old wife said, ‘I share everything with him. I guess the only thing that maybe I don’t share too much is the crying when I get my period every month’. A 36-year-old woman described being careful about mentioning her partner’s infertility diagnosis, ‘He’s very sensitive and, you know, he thinks I’m going to go off and leave him for a younger man, and—like, oh brother. Really?’ Participants who had medical backgrounds described being careful not to share what they knew regarding risks and potential complications of medical treatments.

The majority of participants described feeling supported by their partner in making family-building decisions, but participants also reported feeling pressured by their partner. In particular, men described feeling pressured about money and about having timed sexual intercourse, e.g. the 43-year-old man who said, ‘she was, like, okay, we need to try again and I’m just like—it felt like a job—a third job, and I don’t need another job’.

Changing decisions over time was another common theme. Looking across each set of interviews over time, from a quarter to a third of couples changed their minds about how to proceed in family-building. A salient example of this was in the number of embryos to transfer during IVF. The four couples who tried IVF recognized the importance of the decision about embryo transfer and carefully considered it with their partners and providers. While one participant consistently wanted to transfer a single embryo, the rest reported uncertainty about this decision. At the first IVF attempt, two of the four couples transferred more embryos than they had originally planned and one couple transferred fewer than originally planned. Couples attributed the change to finding out new information about embryo quality and to seeing a different provider at the transfer than they had seen previously. One woman described the stress of having to make this decision alone because her partner did not attend the visit.

Many couples identified finances and (lack of) insurance coverage as key factors in the implementation of decisions, with most citing these factors as constraints. Couples with higher incomes who were better able to purchase their desired care generally moved more quickly in implementing their preferences, while couples whose finances were more constrained delayed pursuing treatment that they otherwise agreed to. Couples recognized that each decision had the potential to constrain future options, e.g. the 33-year-old man who said, ‘We’re weighing our options. Do we save the thousands of dollars that it’s going to cost [to try IVF] or do we put that towards an adoption fund?’ and the 28-year-old woman who said, ‘I feel like we’re gonna get one shot. I’m just so scared of making the wrong decision. IUI sounds great, as long as it works, great, but then I’m so scared of whatever I choose not working and then being like, “why did I choose that?”’

Decisional conflict before and after the initial consultation

Before the initial consultation, average DCS scores were above the threshold for delaying decisions among women and men (Table IV). Men’s scores were higher than women’s on all subscale scores, though the magnitude of differences varied by subscale. The largest differences within couples were in the Informed and Values Clarity subscales. Women’s highest scores were on the Uncertainty subscale, which measures uncertainty in choosing options. In the interviews, women described uncertainty around which path to pursue, ‘like okay my period came again, what are we gonna do this month, are we gonna continue with the Clomid, are we gonna go back to the doctor?’ (Woman, 28 years) and ‘I would like to know if something’s wrong so then we know what our options are for pursuing.’ (Woman, 31 years) Multiple women described perceived differences with their partners regarding openness to adoption, for example; ‘If we don’t get pregnant, what would the next step be? And he’s said very adamantly that he wouldn’t want to adopt. I said I would, so that is a big discrepancy.’ (Woman, 36 years) and ‘I don’t know if he would ever change his mind if things didn’t work for us…. I think he would just not have children rather than adopt, whereas I would adopt.’ (Woman, 36 years). Men’s highest scores were on the Informed subscale, which measures feeling informed about decision alternatives, benefits and risks. In the interviews, men described wanting information from the consultation, e.g., ‘we kept talking about waiting till at least the new year [to make an appointment], but then I suggested that we start before the new year, and we could go into the new year with some direction.’ (Man, 27 years) Others described trying to do research ahead of time, ‘Well, at this point, just in passing, maybe some basic Internet search. You know, in vitro, those types of methods.’ (Man, 36 years)

Table IV.

Observed decisional conflict scores among 34 women and 34 men experiencing infertility before and after an initial specialty consultation.

Decisional conflict scale or subscale	Sex	Pre-consult (T1)		Post-consult (T2)		T2-T1 P value
		Mean	SD	Mean	SD
Total	Women	40.2	18.3	29.8	16.7	<0.001
	Men	48.9	20.0	32.9	13.8	<0.001
Informed	Women	48.0	25.2	32.4	18.4	<0.001
	Men	59.4	21.9	41.4	19.9	<0.001
Values clarity	Women	39.5	25.0	27.9	19.9	0.002
	Men	52.2	25.5	31.1	20.9	<0.001
Support	Women	25.7	16.8	19.1	14.3	0.026
	Men	32.6	19.1	25.0	12.3	0.011
Uncertainty	Women	51.7	24.6	38.5	23.1	<0.001
	Men	56.4	23.2	36.5	19.9	<0.001
Effective decision	Women	38.2	20.4	30.7	19.7	0.053
	Men	44.9	26.7	30.9	16.7	0.004

Post-consultation, scores were still high, but there was a significant decrease in decisional conflict compared to pre-consultation for both women (P < 0.001) and men (P < 0.001), reflected in the Total score as well as all subscale scores (Table IV). The largest difference between pre- and post-consultation for men was the Values Clarity subscale, while the largest difference for women was the Informed subscale. In the post-consultation interviews, women described new discussions with their partners about family-building in the context of the new information they had post-consultation, including specific fertility treatment options, their respective costs, benefits and potential challenges associated with particular options. A 36-year-old woman said, ‘We—I actually took out some of the literature they had given me, to looking at the different possibilities with IVF and different attempts and the prices of those. When I told [my partner], he was like, wow, that’s a lot of money. And I’m like I know, I agree…. But if that’s part of the choice versus waiting a couple of years when maybe financially we’re at a better place, but then it’s significantly more difficult, yeah, we might decide to do it now instead’. Themes were similar for men in the post-consultation interviews, discussions with partners about family-building including treatment options, alternatives to treatments and costs, for example the 43-year-old man who said, ‘I’m thinking naturally. She’s thinking okay, we can’t do it naturally. Then we’ll try the other way. And I’m open to just about anything’.

Within-couple differences in observed decisional conflict scores over time

Pre-consultation, men had significantly higher decisional conflict than women (within couples) by an average of nearly nine points on the Total scale (P = 0.037) and by an average of about seven points at 2 months (P = 0.014) (Table V). The differences between men and women within couples were not significantly different post-consultation, or at 4, 8 or 12 months. Within-couple correlations in decisional conflict were largest at 2 months/post-testing (r = 0.422, P = 0.015) and smallest at 12 months (r = −0.090, P = 0.669).

Table V.

Observed decisional conflict total scores over time and comparisons within couples.

		Women		Men		Paired t test	Pearson’s correlation
Role	No. of couples a	Mean	SD	Mean	SD	P value	r	P value
1 week pre-consult	34	40.2	18.3	48.9	20.0	0.037	0.271	0.121
1 week post-consult	33	30.4	16.5	33.9	12.7	0.268	0.352	0.041
2 months/post-testing	32	22.1	15.1	28.9	14.6	0.015	0.422	0.015
4 months	25	20.8	15.4	23.8	15.5	0.401	0.321	0.073
8 months	22	25.0	22.4	22.3	13.0	0.616	0.137	0.496
12 months	17	17.7	16.8	14.9	14.4	0.640	−0.090	0.669

^{a a}Among couples not currently pregnant or parenting a new child.

Adjusted decisional conflict over time

Among men and women in a position to make family-building decisions, that is, not currently pregnant or parenting a new child, and adjusting for demographic and fertility-related factors, total DCS scores declined significantly over time (Fig. 1). Pre-consultation mean scores for women (40.0, 95%CI 34.9–45.1) and men (48.5, 95%CI 43.8–53.2) were above the threshold associated with delaying decisions. By 2 months post-consultation, women had crossed the threshold associated with implementing decisions (22.9, 95%CI 17.6–28.1). Men did not cross this threshold until the 4-month post-consultation period (21.9, 95%CI 16.2–27.5). The only covariate with a statistically significant relationship to decisional conflict score was IUI or IVF treatment, which was associated with decreased decisional conflict for women (P < 0.01).

Figure 1.

This figure illustrates a significant decrease in total decisional conflict scale (DCS) score over time among women and men who are not currently pregnant or parenting (in position to make family-building decisions) after adjusting for demographic and fertility-related factors. Red trend lines represent women while blue lines represent men. The interrupted horizontal lines represent total DCS thresholds below 25.0 associated with implementing decisions and scores greater than 37.5 associated with delaying decisions.

Discussion

Before an initial consultation with a reproductive specialist, men and women experiencing infertility reported high decisional conflict regarding family-building paths. Evidence from the interviews with these couples supported this; going into an initial consultation, the vast majority had not made any decisions and were seeking information and advice about options. Men had higher decisional conflict than women, likely stemming from lack of information, as the ‘informed’ subscale was highest among men before and after the initial consultation and as compared to women. Both the qualitative interviews and a separate analysis of time use (Cusatis et al., 2019) suggest that women had often done more research before the initial consultation. While women were, on average, more informed than their partners, women’s scores were highest on uncertainty about options. Post-consultation, DCS scores decreased and men’s and women’s scores were more similar, though most men and women still were not prepared to implement a decision. Scores fell below the threshold for ‘implementing decisions’ at 2 months post-consultation for women and 4 months post-consultation for men, that is, women felt ready to implement family-building decisions more quickly than their male partners.

We do not consider making a decision sooner good or bad per se. In our experience, the decision to pursue treatments often takes time, perhaps because of financial considerations or because couples need time to reconcile themselves to needing assistance. At the first appointment a couple’s evaluation may be completed, but it is important to have subsequent visits in which data on success, risks and costs of treatment options are presented and there is sufficient time to discuss them. Physicians not only provide medical expertise but also help to guide patients’ choices (Verma et al., 2014). We saw clear evidence that patients recognized how any one decision could constrain future options. One implication of these findings is for physicians to emphasize the importance of having both partners present at appointments to optimize those discussions and decisions. While the majority of men in our study attended the initial consultation, fewer attended subsequent visits. The differences between men and women on time to resolving decisional conflict also supports the importance of encouraging partners to attend more visits and underscores the importance of sharing information about options with both partners.

A previous study suggested that many individuals seeking fertility treatment had inadequate information about IVF (Lyerly et al., 2011), and another showed that inadequate information about where and what fertility treatment options are available and their costs were drivers of high uncertainty in infertile couples (Mersereau et al., 2013). Importantly, because decisions may need to be revised with new medical information, not attending all visits led to some fathers not being able to participate in shared decision-making. While couples indicated a general understanding of a medical-team model (wherein the provider with whom the couple consultations may not conduct the transfer) and the benefits of this approach, they clearly did not appreciate the implications of this model for making decisions about how many embryos to transfer during IVF. In this context, couples may benefit from a direct discussion with their provider early in the process that makes clearer that (i) new information is often available at the time of embryo transfer and thus medical recommendations may change; (ii) different providers hold different perspectives and may offer different advice; and thus (iii) both partners should be present at the transfer itself to make a final decision together.

It merits noting that the DCS measures individual conflict, so men and women who this instrument identifies as being closer to making a decision are not necessarily moving toward the same decision point as their partners, though certainly couples in our sample were seeking to and discussed at length their approaches to, reach intra-couple consensus around a decision plan. Indeed, the vast majority of couples pursued at least one path towards parenthood during the 12-month study.

Some couples in our study experienced difficulties communicating with their partners, similar to past studies (Schmidt et al., 2005). Three of our couples had ended their relationship by the 12-month interview. These three couples had notable communication problems from the start (evidenced by different stories told to the interviewers) as well as other relationship issues (e.g. undisclosed debt). We do not believe that decisional conflict regarding infertility was a chief reason for relationship dissolution for these couples, though it seems possible that the additional stress of infertility may have contributed. Rich et al. (2016) recommended ways for reproductive specialists to reduce psychological stress related to infertility by focusing on how to effectively communicate treatment options and their advantages in a timely manner as well as referral of patients for emotional support or counseling (Rich and Domar, 2016). Gameiro et al. (2013) also recommends reducing fertility treatment burden by addressing patient vulnerability, such as screening for psychological distress, referrals for support and promoting positive patient–physician interactions through communication and shared decision-making (Gameiro et al., 2013).

Our study has limitations, particularly that it is a convenience sample from a single academic center which limits the generalizability of our results. Much of the research in this field to date has been conducted in Europe, where the costs and insurance coverage of assisted reproductive technologies are vastly different from the United States (NCSL, 2014). Few of our participants had insurance coverage, and we observed that finances seemed to be related to decision delay, though in our adjusted models, placing a high priority on the cost of family-building options was not significantly associated with decisional conflict. Our sample size limited our ability to examine the role of infertility diagnosis beyond male, female and other/unexplained, but future studies should explore the role of particular diagnoses in decisional conflict. For example, a couple with diminished ovarian reserve considering IVF with low likelihood of success versus using donor eggs is likely to have more decisional conflict than a couple with low sperm motility deciding between IUI and IVF. Despite these limitations, our findings contribute to the body of knowledge by exploring decisional conflict over time in both men and women.

To our knowledge, this is the first comparison of couples’ decisional conflict regarding family-building options and the first US-based, in-depth, longitudinal examination of couples’ decision-making and decisional conflict during infertility. The gender differences seen in men’s and women’s descriptions of their infertility decision-making processes and their decisional conflict scores underscore the need for reproductive care that includes both partners in decision-making conversations. Men may experience significantly longer decisional delay compared to women because they are not attending as many appointments after the initial consultation. Future studies should consider validating these findings with larger cohorts and test the effect of decision aids or decisional support technology that provide decisional support for fertility treatment decision-making over time. Our previous work identified a conceptual framework for patient-centered infertility treatment that includes six dimensions: effectiveness, physical and emotional burden, time, cost, potential risks and genetic parentage (Duthie et al., 2017b). Expanding on this, patients in our cohort requested decision support for the broad range of ways that people address infertility, including expectant management, medical treatment, adoption or choosing to live child-free.

Conclusions

Understanding how couples discuss and make decisions regarding family-building could improve the delivery of patient-centered infertility care. Among couples experiencing infertility who sought a specialty consulation, men and women reported high decisional conflict regarding family-building paths. Decisional conflict between women and men differed significantly, and on average, women resolved decisional conflict more quickly than their male partners.

Authors’ roles

All authors (R.A., R.C., N.F., A.C., K.D.S., J.B.D., J.S., K.E.F.) contributed significantly to the manuscript. R.A., R.C., A.C., K.D.S. and K.E.F. were responsible for the design and execution of the study. J.B.D., J.S., K.D.S. and K.E.F. contributed to data collection. R.A., R.C., N.F., K.S. and K.E.F. to analysis and writing.

Funding

National Institute of Child Health and Human Development (R21HD071332 to K.E.F.); Research and Education Program Fund, a component of the Advancing a Healthier Wisconsin endowment at Medical College of Wisconsin (to K.E.F.); a National Research Service Award (T32 HP10030 to R.C.); additional support for the use of REDCap for data collection from the National Center for Advancing Translational Sciences, National Institutes of Health under Grant through (8UL1TR000055).

Conflict of interest

None declared by all authors.