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. Author manuscript; available in PMC: 2016 Jul 1.
Published in final edited form as: Fertil Steril. 2015 May 21;104(1):180–187. doi: 10.1016/j.fertnstert.2015.04.002

First Contact: the intersection of demographics, knowledge, and appraisal of treatment at the initial infertility visit

Krista J CHILDRESS 1, Angela K LAWSON 1, Marissa S GHANT 1, Gricelda MENDOZA 1, Eden R CARDOZO 2, Edmond CONFINO 1, Erica E MARSH 1
PMCID: PMC4494863  NIHMSID: NIHMS693744  PMID: 26003271

Abstract

Objective

To determine the impact of the initial infertility visit on treatment-related knowledge, patient anxiety, and appraisals of treatment.

Study Design

Prospective survey.

Setting

Academic medical center.

Patients

234 English-speaking women, ages 18-50, attending their first infertility visit

Intervention(s)

Participants completed a survey assessing health literacy, knowledge, anxiety, and appraisals of the treatment process before and after their infertility visit.

Main Outcome Measure(s)

1) Knowledge of infertility and treatment and, 2) Anxiety and appraisal scores.

Results

Most participants were white and earned >$100,000/year and had at least a college education. Baseline knowledge of reproductive anatomy, ART, and fertility factors was modest, but improved after the initial visit. Factors associated with higher knowledge included higher education and income, White or Asian ethnicity, and English as their primary language. Patient appraisals of treatment represented by the positive (Challenge) and negative (Threat and Loss) subscale scores on the Appraisal of Life Events (ALE) scale, changed from the pre-visit survey to the post-visit survey. Negative appraisals of treatment and anxiety scores decreased and positive appraisals of treatment increased after the initial visit. Lower knowledge was associated with higher positive appraisal scores lower health literacy was associated with higher anxiety and appraisal scores (positive and negative) post-visit. Black women had higher Challenge scores compared to White and Asian women. Hispanic women had higher anxiety scores than non-Hispanic women.

Conclusions

Infertility patients have modest baseline knowledge of fertility and infertility treatment. The initial infertility visit can improve this knowledge and decrease both negative appraisals of treatment and anxiety levels. Differences in knowledge and appraisal were seen across ethnic groups and other demographic variables. Physicians should individualize patient counseling to improve patients’ knowledge and provide realistic treatment expectations, while also reducing patient anxiety.

Keywords: infertility, knowledge, appraisal, anxiety, treatment

Introduction

Approximately 6% of married women of reproductive age in the United States experience infertility and about 12% of women of reproductive age have impaired fecundity and have used infertility services (1). In 2012, a total of 176,247 cycles of assisted reproductive technology (ART) resulted in 65,160 live-born infants, and today over 1% of all infants born in the United States every year are conceived using ART (2). Although there are a large number of women undergoing infertility treatment today, 23-60% of couples discontinue infertility treatment before achieving a pregnancy (3-5). Research has found that one of the most common reasons for premature treatment termination is the psychological burden or stress of treatment (6).

According to a cognitive-phenomenological theory of stress, appraisal and coping, an individual's cognitive appraisal (the act of estimating the value of something or someone) of a situation is integral to the experience of stress and is related to both the individuals’ ability to cope with the stressor as well as psychological outcomes associated with the stressful event (7). Infertility has been found to be a stressor that can give rise to psychological difficulties such as anxiety, depression, and distress (8). Further, studies have shown that women, who appraise infertility as a stressful situation, have significantly higher levels of infertility-related stress, anxiety, depressive symptoms, and negative mood states (9-11).

Additionally, research suggests that lack of fertility-related knowledge might also be a stressor that results in negative appraisals of treatment and increased patient distress (12, 13). Global surveys have unfortunately shown that women using ART have poor knowledge of fertility and the biology of reproduction (14, 15) and additional studies have pointed out that more attention should be given to the psychological aspects of infertility treatment by optimizing patient's experience and understanding of the infertility treatment. Greater attention paid to patient knowledge and experiences during infertility treatment are hypothesized to improve cognitive appraisal of treatment and lead to less emotional distress and perhaps a higher rate of treatment success through treatment continuity (6, 12, 16, 17). Along these same lines, general health outcomes literature suggests that a patient's health knowledge and health literacy both play a role in comprehension of disease and treatment which closely relates to treatment outcome, patient satisfaction, and overall quality of life (18-20).

Although there has been abundant research assessing infertility patients’ knowledge of infertility and infertility treatment as well as the psychological outcomes associated with fertility treatment, to our knowledge there are no studies assessing the impact of the initial visit with an infertility specialist on patient knowledge of reproduction and infertility, anxiety, and/or appraisal of infertility treatment. Thus, the primary aims of the present study were two-fold: 1) To examine whether fertility patients’ knowledge improves after an initial visit with an infertility specialist and which factors are associated with any increase in knowledge and 2) To assess the impact of the initial infertility visit and treatment related knowledge on patient anxiety and appraisals of infertility treatment.

Materials and Methods

This study was reviewed and approved by the Northwestern University Institutional Review Board. Women were recruited while attending their initial visit with an infertility specialist at an outpatient university based infertility clinic in a large Midwest city between January, 2013 and February, 2014. Women included in this study were between 18-50 years old, English-speaking, and attending their first visit with an infertility specialist. Subjects who did not meet these criteria were excluded. Upon arrival to their appointment, patients were taken by a study coordinator to a private area where the study and its components were explained. Written informed consent was obtained by all patients who agreed to take part in the study.

Participants who consented to take part in the study were first administered the Rapid Estimate of Adult Literacy in Medicine Short Form (REALM-SF), a validated 7-item word recognition written test to assess patient health literacy. The highest possible REALM-SF score is 7, which is equivalent to a high school reading level and implies that a woman will likely be able to read and understand most patient education materials, while a score of 4-6 is equivalent to a 7-8th grade reading level and implies that a woman may struggle with most patient education materials (21).

Participants then completed the Fert-AP (Fertility, Anatomy, and Physiology) pre-visit survey (see description of survey creation below). Completion of the REALM-SF and pre-visit Fert-AP survey took approximately 20 minutes. At the completion of these two assessments, patients proceeded with their regularly scheduled visit with an infertility specialist in the Reproductive Endocrinology and Infertility (REI) clinic. After the visit with the infertility specialist was finished, each participant completed a post-visit Fert-AP Survey. The results of the surveys were then entered into a secure database by study staff.

Survey Design

The development of the Fert-AP survey was based on knowledge of specialists familiar with infertility treatment and a thorough review of the available literature and previous surveys (14, 22-28). The survey was piloted and revised by physicians and psychologists in the Reproductive Endocrinology and Infertility Division, generalist obstetricians and gynecologists, and participants in the University Communications Program. The first part of the survey contained questions on demographic information. The remainder of the survey included questions on female reproductive anatomy, ART, fertility factor awareness knowledge, the ALE (Appraisal of Life Events) scale, and a single item Likert scale anxiety question. The questions chosen for the survey were selected by a team of health care providers with expertise in infertility treatment. These survey questions were a compilation of questions from previous surveys and novel ideas from the health care providers involved in the design of this study. These items represent topics that would be beneficial for patients to be knowledgeable of during the infertility treatment process in order to make treatment decisions.

On the pre-visit Fert-AP survey, knowledge was assessed in three areas: female reproductive anatomy, ART, and fertility factor awareness knowledge. Knowledge of female reproductive anatomy and physiology was assessed using multiple choice questions and two visual diagrams on which participants were asked to label parts of the female reproductive pelvic anatomy and the location of the uterus within the female body. The ART knowledge section contained multiple-choice questions and 7 ART terms that participants were asked to indicate if they had ever previously been aware of the terms. The fertility factor awareness section contained multiple-choice and true/false questions pertaining to factors that affect reproduction. The post-visit Fert-AP survey contained select questions from the pre-visit Fert-AP survey including the 7 ART treatment terms and a combination of 13 questions (female reproductive anatomy, ART, and fertility factor awareness knowledge) that were believed to be topics that would be addressed at the initial visit with an infertility specialist.

Both the pre and post-visit Fert-AP surveys contained the Appraisal of Life Events (ALE) Scale (29). The ALE scale is a validated self-reported questionnaire that can be used retrospectively by individuals to reflect on the impact of a previously experienced stressful event. (29). This scale was used because a person's beliefs or appraisals about infertility treatment are partially determined by their infertility experiences (14) and reflect the way in which individuals perceive and evaluate a stressful situation (7). This perception of whether a stressful event is traumatic or less critical lies in the meaning of the experience constructed by each individual (30). On the ALE scale, participants are asked to rate their perceptions of a specific event by selecting the extent to which each of the adjectives best describes their perceptions (e.g. threatening, fearful, enjoyable, challenging, exciting). These adjectives were used to assess the three appraisal dimensions of Lazarus and Folkman's transactional model of stress: Loss (refers to the damage or loss that has already been done), Threat (the anticipation of future harm), and Challenge (demands that a person feels confident about mastering and an opportunity for growth) (29).

Loss and Threat are negative valence appraisals, while Challenge is considered a positive appraisal (29). In the present study, participants were asked to use this scale to rate the extent that each of the stated adjectives best described their perceptions of their upcoming infertility treatment by selecting a number on a six-point Likert scale (where 0 = not at all to 5 = very much so). The final component of the pre and post-visit surveys included a single-item 5-point Likert question asking participants to indicate their current level of anxiety (0 = not anxious to 5 = extremely anxious). This tool was present on both the pre-visit and post-visit surveys to allow assessment of patients’ anxiety level before and after the initial visit with an infertility specialist.

Survey responses on knowledge questions were dichotomized; each correct answer received a score of 1, whereas incorrect responses including “I don't know,” received a score of 0. Correct answers were summed to produce the cumulative knowledge scores. On the pre-visit survey, cumulative knowledge scores were calculated for each specific knowledge section (female reproductive anatomy, ART, and fertility factor awareness). An overall knowledge score, combining scores from the three sections on the pre-visit survey, was calculated for the pre and post visit surveys.

Statistical Analysis

The chi-square test, Wilcoxon t-test, Mann-Whitney U Test, Kruskal-Wallis test, and Spearman's correlation were used to analyze the data as the data were not normally distributed. A p value of less than 0.05 was considered statistically significant. All statistical analyses were performed using SPSS (PASW version 18.0) software.

Results

Demographics

A total of 336 women were approached, 254 were consented, and 234 completed the study. Twenty participants were excluded because they were presenting for treatment for reasons other than infertility, had already seen an infertility specialist in the past, or opted not to complete all surveys. Data from the patients who were not consented because they chose not to participate in the study and the twenty participants who were deemed ineligible were not included in the subsequent analyses. Demographic data are summarized in Table 1. On average participants were 34.8 ± 4.7 (mean± SD) years of age. The majority of women were born in the US (83.8%), used English as their primary language (>90%), had a household income of > $100,000 (68.4%), and had > a 4 year college degree (>90%). 70.1% of participants self-identified themselves as White, 11.1% as Black, and 10.7% as Asian and 9.0% self-identified as Hispanic. 79.9% of the participants were married and 98.2% self-identified as heterosexual. 62.0% of participants had never been pregnant, 23.1% had at least one ectopic pregnancy or miscarriage, 73.9% knew someone who had undergone infertility treatment, and 52.1% had learned about infertility treatment from a physician. The average participant REALM-SF score was 6.93 ± 0.27 (out of 7) indicating at least an average high school reading level with a very small standard deviation.

Table 1.

Subject Demographics

Age ± SD 34.8 ± 4.7
BMI ± SD 25.4 ± 7.3
Country N (%)
USA 196 (83.8%)
Other 36 (13.2%)
Sexual Orientation N (%)
Heterosexual 229 (97.9%)
Lesbian/Homosexual 4 (1.7%)
Current Relationship Status N (%)
Married 187 (79.9%)
Single 28 (12%)
Other 8 (3.4%)
Common Law: Partner 7 (3.0%)
Divorced 3 (1.3%)
Racial Background N%
White 164 (70.1%)
Black 26 (11.1%)
Asian 25 (10.7%)
Other 17 (7.3%)
Ethnicity N (%)
Non-Hispanic 207 (88.5%)
Hispanic 21 (9.0%)
Education N (%)
4-year college degree 98 (32.5%)
Master's degree 76 (32.5%)
Doctoral degree (MD, JD, PhD) 45 (19.2%)
Some college 14 (6.0%)
High school or GED 1 (0.4%)
Other
Women with No Children 194 (82.9%)
Women Never Pregnant 145 (62.0%)
Women with at least 1 Ectopic/Miscarriage 54 (23.1%)
Income N (%)
<$50,000 12 (5.1%)
$50,000 to less than $100,000 45 (19.2%)
$100,000 to less than $150,000 61 (26.1%)
$150,000 to less than $200,000 46 (19.7%)
>$200,000 53 (22.6%)
I don't want to say 17 (7.3%)
Learn About Infertility Tx N (%)
Family 13 (5.6%)
Friend 31 (13.2%)
Doctor 122 (52.1%)
Internet 12 (5.1%)
TV 1 (0.4%)
Combinations 45 (19%)
Other 6 (2.6%)
Who Do You Know (Infertility Tx)? N (%) -out of 173 who said “yes”
Friend 105 (60.7%)
Friend & Work Colleague 32 (18.5%)
Family Member 18 (10.4%)
Work Colleague 9 (5.2%)
Other 7 (4.0%)
REALM-SF Average score out of 7
REALM-SF Score ± SD 6.93 ± 0.27

*Data reported as N (%) or mean ± standard deviation

Knowledge Data

Figure 1 shows the female body, infertility treatment, and fertility factor awareness baseline knowledge scores. The average overall cumulative knowledge score for the pre-visit survey was 68.6±11.7%. There was no significant difference in baseline knowledge of female body (86.4±12.7%) compared to Infertility/ART knowledge (62.9±20%) and fertility factor awareness knowledge (59.4±16.5%), however participants did have greater baseline female body knowledge than Infertility/ART and fertility factor awareness knowledge. Examples of the most commonly missed items include: Correct labeling of the cervix (56.4%) and endometrial lining of the uterus (41%), and less than 50% of participants knew that FSH and AMH could be used as markers for ovarian reserve or that a hysterosalpingogram could be used to determine if fallopian tubes are patent. Figure 1 also shows the significant improvement in post-visit knowledge scores of ART terms heard (P<.001) and cumulative infertility/ART knowledge (P<.001).

Figure 1. Knowledge Scores.

Figure 1

This figure shows the baseline knowledge scores of (A) female body knowledge (B) ART knowledge and (C) fertility factor awareness knowledge. The vertical line represents the mean score for each section. There is a significant improvement in post-visit (D) ART terms heard and (E) composite infertility/ART knowledge.

ALE and Anxiety Scores

Figure 2 shows the pre and post-visit ALE appraisal subscale scores. Post-visit Threat and Loss ALE subscale scores (P<.001) were significantly lower than pre-visit scores. Post-visit Challenge ALE subscale scores however, were higher than pre-visit scores (P=0.045). Anxiety scores were also significantly lower post-visit (P<.001)

Figure 2. ALE Appraisal Subscale Scores.

Figure 2

There is a significant reduction in post-visit (A) Threat and (B) Loss subscale scores and a significant increase in post-visit (C) Challenge subscale scores compared to pre-visit.

Correlations and Significant Differences

Table 2 shows the correlations between demographic characteristics and knowledge scores. As expected, higher socioeconomic status (e.g., income, education) was generally associated with greater knowledge of ART terms, fertility awareness knowledge, and cumulative knowledge scores. Additionally, racial/ethnic background was also found to correlate with ART knowledge, fertility knowledge, and cumulative knowledge scores, with White and Asian women generally reporting the greatest knowledge. There were no significant correlations between female body knowledge and demographic characteristics.

Table 2.

Statistically significant relationships

Relationships Between Demographics and Knowledge Categories
p-value r
Infertility/ART Knowledge
    How many children do you have? .001 .207*
    Sexual orientation (heterosexual>homosexual) .028
    Racial background (White>Asian/Black/Other) .009
    Ethnicity (Non-Hispanic> Hispanic) .042
Fertility Factor Awareness Knowledge
    Racial background (White/Asian>Black/Other) .025
    Level of Education (higher education) .007
    Household income (higher income) .017
    Primary language (English) .001
ART Terms Heard
    How many children do you have? .017 .115
    BMI .020 −.115
    Racial background (White/Asian>Black/Other) .001
    Education (higher education) .005
Cumulative Knowledge
    Racial background (White/Asian>Black/Other) .003
    Education (higher education) .001
    Household income (higher income) .033
    Primary language (English) .043
Relationships between psychological measures, knowledge, and demographics.
p-value r
Pre-Visit
        Challenge
        Female body knowledge .033 −.140
        ART terms heard .030 −.143
        Number of miscarriages/ectopic pregnancies .009 −.204
        Relationship status (married) .001
        Racial background (Black/Other>White/Asian) .003
        Ethnicity (Hispanic>Non-Hispanic) .011
        Loss
        Age .039 −.157
        Relationship status (married) .034
        Anxiety
        REALM-SF .003 −.198
        Ethnicity (Hispanic > Non-Hispanic) .015
        Primary language (Spanish) .044
        Pre-visit threat <.001 .622
        Pre-visit loss <.001 .499
        Post-visit threat <.001 .496
        Post-visit challenge .004 .193
        Post-visit loss <.001 .346
Post-Visit
        Challenge
        Cumulative Knowledge .010 −.168
        Female Body Knowledge .009 −.171
        ART Terms Heard <.001 −.228
        What is your age? .010 .196
        Relationship status (divorced) .002
        Racial background (Black/Other>White/Asian) .003
        Ethnicity (Hispanic>Non-Hispanic) .001
        Household Income (lower income=higher challenge) .040
        Anxiety
        Pre-visit threat <.001 .532
        Pre-visit loss <.001 .384
        Post-visit threat <.001 .692
        Post-visit challenge .004 .187
        Post-visit loss <.001 .553
*

continuous variables are represented with Spearman associations

Note: Full correlation tables are available upon request.

Table 2 also shows correlations between knowledge, demographics, and appraisal and anxiety scores. In terms of appraisal and anxiety scores, lower female body and ART knowledge, lower numbers of miscarriages/ectopic pregnancies, married relationship status, Black and other race, and Hispanic ethnicity were associated with higher pre-visit Challenge scores. Post-visit, lower Challenge scores were correlated with greater cumulative knowledge, younger age, and higher income being associated with lower Challenge scores. Younger age and married relationship status were associated with higher pre-visit Loss scores and Hispanic ethnicity was associated with higher pre-visit anxiety scores. Higher pre and post-visit anxiety scores correlated with higher pre and post visit Threat and Loss scores and higher post-visit Challenge scores. Greater health literacy correlated with lower pre-visit anxiety scores.

Discussion

The current study is the first to assess the impact of the initial visit with an infertility specialist on patient knowledge of female reproductive anatomy and physiology, ART, fertility factor awareness, appraisals of infertility treatment, and anxiety. Overall, patients presented with a modest level of infertility knowledge, however after the initial visit with an infertility specialist, patient knowledge, appraisals, and anxiety scores improved. In addition we also found differences in these improvements correlated with specific demographic variables and health literacy.

Consistent with previous studies, our findings suggest that infertility patients have only modest reproductive anatomy, ART, and fertility knowledge with an average score of 68.6% (14, 15, 22-27, 31-36). However, significant improvement in knowledge scores after the initial visit suggests that the visit with an infertility specialist may be a key opportunity for providers to educate patients on fertility factors and the infertility treatment process. Also similar to previous findings by Bunting et al (14), data from the present study found that certain socio-demographic factors including racial background and education correlate with higher knowledge scores and certain beliefs about treatment.

In this study, negative appraisals (i.e. Threat and Loss) and anxiety levels decreased after the initial visit, while positive appraisals (i.e. Challenge scores) increased (P<.001). Consistent with Lazarus and Folkman's model of stress, appraisal and coping; it appears that education during the initial visit with an infertility specialist may improve cognitive appraisals of the infertility treatment process and thus reduce anxiety (7). Given psychological distress is often cited as the primary reason for treatment discontinuation, this reduction in psychological burden may lead to less treatment discontinuation prior to achieving pregnancy (6).

Although scores on the Threat and Loss subscales decreased after the initial visit, scores on the Challenge subscale increased. This increase in positive appraisals of treatment indicates that after the initial visit, patients perceived infertility treatment as more exciting, stimulating, and had potential for an overall more positive experience. The relationship between increasing knowledge and higher positive appraisals of treatment in our study signifies that counseling during the initial infertility visit may lead patients to be more invigorated about future possibilities of infertility treatment. These results may also reinforce the conclusions drawn by Bunting et al that improving knowledge and providing a realistic view of treatment can help patients set realistic treatment expectations (14). Also consistent with Bunting et al, the association in the current study between increased Challenge scores and decreased baseline knowledge may also indicate unrealistic treatment expectations in patients with poorer understanding of fertility, infertility treatment and outcomes (14). Thus, providers need to be aware that patients attending their first infertility visit may not have knowledge of the challenging aspects of treatment (e.g. emotional and physical), and subsequently these patients may develop unrealistic expectations of the treatment process (14).

Although never previously studied at the first visit, the results of the current study also reinforce the previously reported negative relationship between health literacy and both appraisals of the treatment process and anxiety levels (18-20). In this study, lower health literacy correlated with higher pre-visit anxiety scores. It is likely that limited health literacy negatively impacts patients’ understanding of the treatment process and this limited understanding may result in poorer treatment related psychological outcomes indicated by higher anxiety scores. Therefore, improved knowledge is indeed powerful, as this knowledge may help reduce anxiety. This may be particularly true for women of different ethnic groups. Consistent with previous research, our study found the majority of patients that participate in fertility treatment are Caucasian, highly educated, wealthy, older women (37). However, in our study we noticed differences in knowledge and anxiety in racial and ethnic group membership. White, Asian, and non-Hispanic women had greater baseline knowledge, while Black women had higher Challenge scores and Hispanic women had higher anxiety scores, suggesting that less knowledge may be associated with higher levels of anxiety. Awareness of these patient factors will allow discussion tailored toward individuals’ baseline understanding of treatment, health literacy, and beliefs to hopefully enable more efficacious patient education and better overall patient treatment experiences.

A limitation of this study was the recruitment of subjects from a single academic setting. This could limit the generalizability of the results. Furthermore, the variation in counseling styles by multiple infertility providers that were employed during this initial visit could not be accounted for in our analysis. Other limitations of this study include the use of a single item anxiety measure and the absence of a coping measurement, which is integral to the theory of Stress, Appraisal and Coping. Patient expectations of infertility treatment success were not assessed on the pre-visit survey, therefore conclusions cannot be made that these patients had realistic or unrealistic treatment expectations. Our study is also limited in the ability to understand if patient knowledge provided by other health care providers improved or detracted from current patient knowledge given we did not assess if patients had seen other providers for infertility education prior to their first infertility clinic visit. Strengths of the study include an adequate sample and the use of validated measures. This study was also unique in that it is the first study looking at the specific impact of the initial visit with an infertility specialist on knowledge, appraisals, and anxiety.

Overall, the results of this study support the conclusion that infertility knowledge, health literacy, and effective physician-patient communication as early as the first visit can affect women's understanding of infertility treatment, appraisal of treatment, and anxiety level. Individualized counseling and resulting increased understanding may lead to less emotional distress, resulting in less premature treatment discontinuation. We do not want to suggest in any way that race or education based counseling is the answer, rather we believe that counseling needs to be tailored for each patient taking all individual characteristics into account. Future research would benefit from assessment of what resources patients use to educate themselves on fertility and infertility treatment prior to their initial infertility visit and whether their sources provide correct patient education. In addition, continued research exploring patients’ pre-fertility treatment knowledge is warranted to ensure efficacious patient education and efficiency in clinical care. Knowledge questionnaires completed prior to the initial visit, followed by tailored written or video presentations on the basics of infertility and infertility treatment could be used to individualize patient care and improve patient knowledge. Future research should also be aimed at determining whether improved knowledge of the infertility treatment process reduces premature treatment termination and unrealistic treatment expectations. This valuable information helps identify which infertility patients are at risk of developing psychological distress and discontinuing treatment prematurely, and identify those who may benefit from a consultation with a mental health professional only in the fertility treatment process.

Acknowledgements

Support for this study was provided by NIH P01HD57877 (EEM), Feinberg School of Medicine – Northwestern University, Northwestern Memorial Hospital, Robert Wood Johnson Foundation (EEM), NIH K12HD050121 Women's Reproductive Health Research Scholar Program at Northwestern (EEM).

Footnotes

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