Abstract
The purpose of this mixed methods, cross-sectional patient survey was to characterize patient experience, to explore the frequency of and reasons for infertility treatment discontinuation and return to infertility treatments. Participants were recruited from United States patient support groups. Participants had received or were receiving ovulation induction (OI) with or without intrauterine insemination (IUI), with or without subsequent in vitro fertilization (IVF), or IVF with no other previous infertility treatment. Live birth was achieved by 62% of participants. Compared with participants treated with OI/IUI only, participants who underwent OI/IUI followed by ≥1 IVF cycle were less likely to consider discontinuing care (64% vs 77%; P = .014) or to discontinue treatment without achieving a pregnancy (40% vs 58%; P = .004). The most commonly cited reasons for treatment discontinuation were financial (62%) and psychological burden/treatment fatigue (58%). Expected versus actual time to pregnancy differed greatly. Continued desire for a child (60%) was the most frequently cited reason for continuing or resuming treatment. Expanded access to treatment, counseling and fostering realistic expectations regarding cumulative time to pregnancy may reduce treatment discontinuation.
Keywords: infertility, treatment discontinuation, IVF, OI/IUI, patient journey
Introduction
Infertility is common in the US, affecting 12%–13% of couples. 1 Infertility has a range of etiologies including ovulation dysfunction, uterine abnormalities, tubal obstruction, peritoneal or cervical factors (female factors), varicocele, oligo/azoospermia, and vasal obstruction (male factors). 1 Still, in approximately 15%–28% of cases, infertility is unexplained.1,2 The infertility ‘patient journey’ begins when a patient, having failed to achieve pregnancy through natural conception, seeks consultation with an obstetrician-gynecologist (OBGYN) or a reproductive endocrinologist (RE) at an infertility clinic; however, in an international survey, respondents waited an average of 3 years before receiving an infertility diagnosis. 3 Further, a substantial number of patients do not even begin treatment following diagnosis, with costs being the most frequently cited reason, followed by the desire to conceive naturally. Depressive symptoms may also be a barrier to patients achieving their reproductive goals. 4 Supportive services helped patients initiate treatment. 3 Each patient journey is directed according to individualized factors including the underlying cause of infertility, age of the patient, insurance coverage, and the physician's and patient's preferences.5-7 While some patients might require diverse medications or surgical interventions, traditional medical treatment options include three primary approaches: ovulation induction (OI) with oral medications, OI with injectable gonadotropins, or in vitro fertilization (IVF; including ovarian stimulation and laboratory procedures).5,8,9 Other family-building options, including the use of donor gametes and embryos, and adoption, are available if traditional methods fail. 10
Although the odds of achieving parenthood through infertility treatment are high (reported cumulative live birth rates of up to 72%, including both fresh and frozen embryo transfers), many patients abandon infertility treatment before pregnancy is achieved.11,12 Discontinuation can occur between diagnostic workup through any stage across the treatment journey. 11 Reported discontinuation rates increase cumulatively with the number of treatment cycles, with 62% of patients discontinuing after 3–4 cycles despite not achieving a viable pregnancy.13,14 While many patients choose to discontinue treatment before achieving a pregnancy, some may later return to treatment. The reasons for discontinuation (or resumption) of treatment at any stage of the patient fertility-treatment journey are not well understood, although financial or psychological reasons, as well as treatment fatigue and poor prognosis have been reported as potential drivers of discontinuation.15-17
While there have been many suggested explanations for why patients abandon care prior to achieving a viable pregnancy and eventual live birth, there is still limited data to assist clinicians in providing needed support during treatment. 18 A comprehensive survey investigating the motivations for starting, discontinuing, or restarting infertility treatment is required. The objective of this study was to obtain patient perspectives on the infertility-treatment journey in the US. In addition, this survey characterized factors associated with patients’ consideration of treatment discontinuation and with actual discontinuation prior to achieving pregnancy, as well as factors that influence decisions to return to infertility treatment.
Methods
Study Design
The study was approved by The New England IRB, Needham, MA (#6736), a central independent review board for sponsors, CROs and individual researchers across North America (recently acquired by WCG IRB). The participants were recruited through the Resolve: The National Infertility Association website, which is open to members and non-members alike. Resolve reached out to their member groups and asked their members to participate in the survey. The study was fielded for 3 weeks. Resolve used established guidelines for online patient research, including patient deidentification. All participants provided informed consent to participate in the survey and were provided no incentive to complete the survey. Patient data collection survey rules were used and open-field text was reviewed every 24 hours to monitor for reported adverse events following treatment with specific medicines. The online, cross-sectional survey was designed to evaluate the number of patients who initiate, discontinue, or consider discontinuing infertility treatment, and to characterize patients’ reasons for treatment initiation, discontinuation, and re-initiation. The survey was validated by several health care professionals, a health educator, and a professional survey writer and those sent the survey were given 1 month to respond.
The survey consisted of 44 multiple choice and short-answer questions, plus 4 questions requesting a qualitative free-text response. In addition to questions on demographic data, the quantitative section asked patients to report on the type and timing of fertility treatments received, time to pregnancy, and if a live birth was achieved. Participants who received IVF treatments and subsequently discontinued those treatments were asked to rank barriers to continuing IVF treatment from 1 (most important) to 11 (least important). Qualitative questions were used to assess factors affecting the patients’ decision-making process when considering treatment discontinuation prior to achieving pregnancy. The survey was administered online for 3 weeks in March–April 2019. The survey tools and methodology were reviewed by New England IRB and considered exempt.
Study Participants
Recruited participants were members of in-person and online infertility patient support groups throughout the US. Participants included adult (aged ≥18 years) female and male patients with a history of infertility treatment (OI with or without IUI or IVF, or IVF directly). For inclusion in the analysis, respondents must have sought infertility treatment with an RE at an infertility clinic; respondents who had not sought treatment at an infertility clinic were excluded.
Analysis
Descriptive statistics were calculated, free-text responses were categorized by theme, and representative patient quotes were reported. Associations between demographic factors and treatment discontinuation (or consideration of it) were evaluated by chi-square or logistic regression with ordinal independent variables, as appropriate. Demographic factors assessed included: education level, annual household income, age, diagnosis of diminished ovarian reserve (DOR), and insurance coverage. Additionally, the type and number of cycles of infertility treatments completed, and whether treatment was initiated with an OBGYN or directly with an RE at an infertility clinic were assessed. A multivariable logistic regression analysis was run to further analyse factors associated with infertility treatment discontinuation. All outcomes were adjusted for age, race/ethnicity, annual household income, current parental status, insurance coverage for infertility services, patient expectations, and treatment plan received from an endocrinologist.
Results
Patient Demographics
Of the 347 participants who started the survey, 315 respondents from 43 US states provided demographic data (Table 1). Of these, 312 (99.1%) were female, and 283 (89.8%) were non-Hispanic White. The most common age group was 31–35 years (n = 122 [38.7%]). The highest education level achieved was a bachelor's degree (n = 126 [40.0%]) and a master's or doctoral degree (n = 128 [40.6%]). The majority (n = 163 [51.8%]) reported an annual household income of $100,000 or greater and only a small number of participants (n = 22 [7.0%]) reported an income below $50,000. Data from the 291/347 (83.9%) completed surveys were included in the analyses of associations between various demographic factors and treatment discontinuation (or consideration thereof); 56/347 (16.1%) respondents had not received treatment from an RE/infertility specialist or did not complete the survey and were not included in the analyses.
Table 1.
Patient Demographics.
Characteristics | Respondents (n = 315) n (%) |
---|---|
Age, years | |
20-25 | 8 (2.5) |
26-30 | 47 (14.9) |
31-35 | 122 (38.7) |
36-40 | 98 (31.1) |
41-45 | 28 (8.9) |
46-50 | 11 (3.5) |
>50 | 1 (0.3) |
Sex, female | 312 (99.1) |
Children in household | |
With children | 152 (48.3) |
No children | 161 (51.1) |
Race/ethnicity a | |
White non-Hispanic | 283 (89.8) |
Black non-Hispanic | 10 (3.2) |
American Indian, Pacific Islander, or Alaskan Native | 3 (1.0) |
Asian | 9 (2.9) |
Hispanic/Latino | 10 (3.2) |
Highest educational achievement | |
Some high school | 1 (0.3) |
High school | 58 (18.4) |
Undergraduate degree | 126 (40.0) |
Graduate degree | 128 (40.6) |
Annual household income | |
<$50,000 | 22 (7.0) |
$50,000 to $100,000 | 128 (40.6) |
>$100,000 | 163 (51.8) |
Respondents were given the option to select more than one response.
Reasons for Treatment Discontinuation/Consideration of Treatment Discontinuation Prior to Achieving Pregnancy
A total of 200/291 (68.7%) respondents who received treatment from an RE at an infertility clinic considered discontinuing treatment. Of these 200 respondents, 60 (30.0%) continued without ever discontinuing, 71 (35.5%) discontinued for a period of time and then restarted, and 69 (34.5%) discontinued with no plan to restart (Supplemental Figure S1). Commonly cited reasons (patients were able to choose multiple reasons) for treatment discontinuation were financial burden (62.3%), psychological burden/treatment fatigue (58.0%), poor prognosis (26.1%), and natural conception (5.8%) (Supplemental Figure S2). The reasons most often cited for staying in treatment were patient desire for a family (47.1%), hope (20.7%), and partner desire for a family (13.2%).
Reasons for IVF discontinuation
Participants ranked the cost of fertility treatments (fertility clinic costs) as the most important barrier that contributed to IVF discontinuation (Table 2). Insurance coverage and the cost of fertility medications (stimulation medications) were identified as the second and third most important barriers to participants who discontinued continuing IVF treatments, respectively.
Table 2.
IVF Barriers Listed from Most to Least Important Among Participants who Discontinued IVF Treatment (n = 107).
Barrier | n | Mean (SD) rank | Median (IQR) rank |
---|---|---|---|
Cost of fertility treatments | 107 | 2.2 (1.7) | 2.0 (1-3) |
Insurance coverage | 106 | 3.0 (2.0) | 2.0 (1-2) |
Cost of fertility medications | 104 | 3.2 (1.2) | 3.0 (3-3) |
Time to achieve pregnancy | 106 | 4.5 (2.0) | 5.0 (4-7) |
Psychological reasons | 103 | 5.6 (2.1) | 6.0 (5-7) |
Risk associated with surgery | 100 | 5.7 (2.1) | 5.0 (3-6) |
Time away from work | 104 | 5.9 (1.9) | 6.0 (4-7) |
Social reasons (religious) | 96 | 7.7 (2.1) | 8.0 (7-9) |
Family pressures | 97 | 8.2 (1.8) | 9.0 (8-9) |
Did not consider IVF | 96 | 9.3 (2.6) | 10.0 (10-11) |
Other | 92 | 9.7 (2.5) | 11.0 (10-11) |
Most important: 1; least important: 11.
Participants were not required to select and order all 11 options for importance. The average rank score is only based on those who chose to answer and not for participants who left that option blank.
IQR, interquartile range; IVF, in vitro fertilization; SD, standard deviation.
Factors Associated with Treatment Discontinuation
Compared with patients treated with OI/IUI only, patients who underwent ≥1 IVF cycles were less likely to consider treatment discontinuation (77% vs 64%, respectively; P = .014) or to discontinue treatment without achieving a pregnancy (58% vs 40%, respectively; P = .004; Supplemental Figure S3), meaning a relative reduction (by nearly one-third) in the probability of discontinuing without success. Patients with higher education levels were less likely to consider treatment discontinuation compared with patients with lower education levels (P = .014; Supplemental Figure S4). However, having a higher education level was unrelated to actual discontinuation (P = .97). A diagnosis of DOR was not associated with considering or actually discontinuing treatment, despite such patients having a poorer prognosis of achieving pregnancy than patients of comparable age with other diagnoses. There were also no trends associated with age, extent of insurance coverage (for IVF only, for OI/IUI only, or no coverage), starting treatment with an OBGYN or with an RE at an infertility clinic, or number of OI/IUI or IVF cycles completed.
The multivariable analysis revealed disparities in participants who discontinued treatment (Table 3). Non-Hispanic Black participants had higher odds of treatment discontinuation compared with non-Hispanic White participants (adjusted odds ratio [aOR] 5.14 [95% confidence interval (CI) 1.14–23.10]), while there were no differences between Hispanic/Latino (aOR 0.73 [95% CI 0.17–3.16]) or Asian (aOR 0.84 [95% CI 0.14–5.02]) and non-Hispanic White participants. Compared with participants with health insurance coverage for infertility services, participants without coverage had higher odds of treatment discontinuation (aOR 2.08 [95% CI 1.17–3.68]). Participants with children had higher odds of treatment discontinuation (aOR 2.20 [95% CI 1.25–3.86]) compared with participants without children. Participants who selected “other” regarding receiving a treatment plan from an endocrinologist had greater odds of treatment discontinuation compared with those who received a plan from an endocrinologist (aOR 5.92 [95% CI 1.55–22.65]); the option of “other” was not defined within the survey and therefore its interpretation was at the discretion of the participant. However, those who did not receive a treatment plan from an endocrinologist did not have greater odds of treatment discontinuation compared with those who did receive a treatment plan from an endocrinologist (aOR 1.59 [95% CI 0.61–4.18]). Age and annual household income were not associated with treatment discontinuation.
Table 3.
Factors Associated with Treatment Discontinuation.
OR (95% CI) N = 315 |
P-value | aOR (95% CI) n = 278 |
P-value | |
---|---|---|---|---|
Age category, years (collapsed) | ||||
20-30 | Ref | |||
31-35 | 1.40 (0.71-2.76) | 0.3301 | 1.25 (0.56-2.77) | 0.5818 |
36-40 | 0.99 (0.48-2.02) | 0.9695 | 0.97 (0.41-2.28) | 0.9378 |
41+ | 1.08 (0.45-2.58) | 0.8692 | 1.04 (0.37-2.98) | 0.9352 |
Missing | N = 0 | |||
Race/ethnicity | ||||
White non-Hispanic | Ref | |||
Black non-Hispanic | 4.62 (1.17-18.26) | 0.0292 | 5.14 (1.14-23.10) | 0.0327 |
Asian | 0.57 (0.12-2.78) | 0.4823 | 0.84 (0.14-5.02) | 0.8492 |
Hispanic/Latino | 0.85 (0.21-3.35) | 0.8143 | 0.73 (0.17-3.16) | 0.6738 |
American Indian/Pacific Islander, Alaskan Native | N/A | 0.9855 | N/A | 0.9849 |
Missing | N = 0 | |||
Annual household income | ||||
>$100,000 | Ref | |||
$50,000–$100,000 | 2.04 (1.25-3.33) | 0.0046 | 1.58 (0.89-2.79) | 0.1170 |
<$50,000 | 1.55 (0.61-3.94) | 0.3616 | 0.78 (0.24-2.56) | 0.6841 |
Missing | N = 2 | |||
Current parental status | ||||
No children | Ref | |||
Children | 1.68 (1.05-2.69) | 0.0318 | 2.20 (1.25-3.86) | 0.0063 |
Missing | N = 2 | |||
Insurance coverage for infertility services | ||||
Yes | Ref | |||
No | 2.12 (1.26-3.58) | 0.0045 | 2.08 (1.17-3.68) | 0.0124 |
Unsure | N/A | 0.9725 | — | — |
Missing | N = 0 | |||
Expectations from time to live birth | ||||
No expectation | Ref | |||
Pregnancy in <1 year | 1.01 (0.51-1.98) | 0.9866 | — | — |
Pregnancy in 1 to 2 years | 0.57 (0.25-1.35) | 0.2011 | — | — |
Never became pregnant | 0.61 (0.11-3.52) | 0.5822 | — | — |
Missing | N = 0 | |||
Treatment plan received from endocrinologist | ||||
Plan | Ref | |||
No plan | 1.32 (0.56-3.08) | 0.5271 | 1.59 (0.61-4.18) | 0.3451 |
Other | 3.69 (1.08-12.58) | 0.0373 | 5.92 (1.55-22.65) | 0.0094 |
Missing | N = 0 |
All outcomes adjusted for age, race/ethnicity, annual household income, current parental status, insurance coverage for infertility services, patient expectations, and treatment plan received from an endocrinologist.
N/A, not available.
Expected Versus Actual Time to Pregnancy
Actual time to pregnancy was longer than patients expected (Table 4). Of patients who thought that it would take <1 year to become pregnant, 42% (78/185) reported that it took >2 years before pregnancy, while 45% (83/185) reported still being on their treatment journey >2 years after seeking treatment.
Table 4.
Patient Expectation Compared with Actual Time to Pregnancy.
Patient expectations | Actual time to pregnancy | Total | |||||
---|---|---|---|---|---|---|---|
0.5 years | 1 year | 2 years | >2 years | Still on journey | Completed family without live birth | ||
I did not have an expectation | 1 | 5 | 5 | 21 | 11 | 0 | 43 |
I would be pregnant in <1 year | 2 | 3 | 14 | 78 | 83 | 5 | 185 |
I would be pregnant in 1-2 years | 0 | 2 | 2 | 8 | 40 | 4 | 56 |
I would never be pregnant | 0 | 1 | 1 | 3 | 2 | 0 | 7 |
Total | 3 | 11 | 22 | 110 | 136 | 9 | 291 |
Qualitative Data
Of the 140 participants who reported discontinuation of treatment at some stage, 93 provided the stage in which they discontinued. Of the 93 participants, 48 discontinued after unsuccessful IVF and 45 discontinued after achieving a pregnancy following IVF. Regardless of treatment stage (during OI/IUI, between OI/IUI and IVF, and after unsuccessful IVF), financial and psychological concerns were the most frequently cited reasons for discontinuation of infertility treatment (Supplemental Figure S5). Continued desire for a child (reported by 60.4%), and changes in clinic (14.6%) or treatment (6.3%) were the most common reasons for resuming treatment after discontinuing.
Free-text responses provided depth and detail that expanded our understanding of treatment interruption and dropout (Supplemental Table S1). Reasons for returning to treatment after a hiatus included reluctance to discontinue care with continued desire for a child and switching to another treatment plan, physician, and/or clinic. Re-fortification over the break from treatment, both financial and emotional, was also reported as a factor (“I felt ready to try and tackle things again”). In response to the question, “What would you tell yourself had you known what you know now about your fertility journey?”, reasons given by participants were the higher-than-expected costs of treatment, the longer-than-expected time to results, the emotional “rollercoaster” of repeated attempts and failures, the need to perform research and ask questions, and the importance of peer support and psychological therapy. Several respondents reported they had not previously been aware of the link between aging and declining fertility, stating they would now not delay attempts to conceive. In response to the question, “What would you tell others to expect on their fertility journey?”, similar themes arose, reinforcing the challenges inherent in the process (eg, setting realistic expectations) and the importance of staying positive and seeking social/psychological support as needed.
Discussion
Participants who received ≥1 IVF cycles with or without previous OI/IUI were nearly 33% less likely to discontinue treatment before achieving pregnancy than patients who underwent OI/IUI only. Patients reported that treatment discontinuations prior to achieving pregnancy were mostly due to financial (62.3%) and/or psychological reasons (58.0%), which is consistent with previously published literature.18-20 Open-text responses corroborated quantitative findings that financial and psychological burden are the primary motivations to discontinue infertility treatment. However, the multivariable analysis suggests that insurance coverage for infertility treatments may offset the financial barrier. Other studies have shown that between 20% and 40% of patients discontinue treatments due to psychological reasons.11-15,18,19 The two most frequently cited reasons for staying in treatment were hope and desire for a family. There was a marked discrepancy between expected and actual time to achieving pregnancy; of those who expected to achieve a pregnancy within a year, more than 40% took more than 2 years and 45% had not achieved a pregnancy after 2 years.
In the current study, participants without insurance coverage were more likely to discontinue treatment compared with those with insurance coverage, while there was no association between annual salary and treatment discontinuation, suggesting that insurance coverage is more important in infertility treatment discontinuation than income. Insurance coverage for infertility treatment is currently mandated by law in only 17 of 50 states in the US, and the extent of coverage is variable between states. 7 Medications and procedures (clinical and laboratory) for fertility treatment are a considerable out-of-pocket expense for patients who don’t have insurance coverage, and it is often assumed that patient discontinuation is largely due to financial constraints, 19 which based on the results of the current study may not be offset by a higher income. However, even when costs are covered, and regardless of prognosis, dropout rates remain high.13,14,16 These high rates of treatment discontinuation may be due to the overall time/number of treatment cycles needed, physical and psychological burdens of treatment, psychological stress, and lack of success.18-20 The psychological burden of infertility has been shown to be as severe as a cancer diagnosis. 18 Longer duration of receiving infertility treatment, poorer psychological functioning, and lack of patient-centered care have all been associated with a low quality of life (QoL) as assessed by a fertility-specific QoL tool. 21
Primary diagnosis and age have been shown to be significant drivers of initial treatment decisions and sequence (P < .0001). 22 Patients with unexplained infertility and ovulation disorders, or polycystic ovary syndrome (PCOS) were more likely to begin with OI and move on to IVF, while older patients (>35 years) were more likely to start directly with IVF. More patients with infertility resulting from male factors or DOR tended to start with IVF compared with patients with ovulation disorders/PCOS.
Extended clinic hours and easy access to mental health professionals have been shown to be factors that could have improved the experience of patients who dropped out of fertility treatment. 18 Other reported recommendations to attenuate treatment discontinuation rates include provision of comprehensive educational material, screening to identify highly distressed patients, provision of tailored coping tools, and improvement in the clinical environment and medical interventions. 23 Other studies have employed interventions providing patients with coping strategies to reduce stress and anxiety on their infertility-treatment journey.24-28
Decision aids are evidence-based tools that can be used in reproductive medicine to educate patients about their options, enabling them to partner with physicians in choosing their treatment. 6 The opportunity to learn from other patients’ experiences and from the advice of professionals is also important to patients.6,29,30 Thus, the results of this study may be of interest to clinics’ patients and staff.
There was a discrepancy between the expected and actual time of pregnancy in this study. Longer duration of infertility treatment has been cited as a factor for discontinuation,11,14,31 thus fostering more realistic patient expectations may reduce treatment discontinuation and dropout rates. A tool showing an evidence-based depiction of the patient journey starting from the diagnostic period and continuing through infertility treatment, treatment failure, pregnancy, and live birth, that included realistic time expectations at each step might help initiate this discussion.
The discussion about timelines to pregnancy and live birth is critically important, considering the experience of the vast majority of otherwise healthy women is an annual examination or an acute disease, such as acute sinusitis. The reproductive health treatment journey is a relatively novel experience for patients. The extended visits over time to fertility clinics for treatment, without clearcut time boundaries, are unusual in medicine in this patient group. Acknowledgement of this disparate finding between expectations and actual time to pregnancy and live birth may help patients acclimate to this journey 16 ; healthcare providers can play a role in managing patient expectations and help improve the patient experience at the clinic.
Although the survey results did not show a correlation between age and discontinuation rate, there is evidence to suggest that older patients are more likely than younger patients to discontinue treatment.32-34 Older patients may be better served by initiating treatment with IVF rather than OI/IUI, given that IVF is associated with a faster time to pregnancy and live birth, and has higher success rates.22,35 However, fast tracking to IVF may not be possible due to restrictions by payers.
The qualitative results of this survey support the need for access to psychological services for patients undergoing infertility treatment. Many respondents described the profound emotional toll during infertility treatment and recognized the importance of self-care, support networks, counseling, and being their own health advocate. While many responses revealed the tenacity of patients not giving up in the face of poor odds and repeated lack of success, others described the degree of devastation and bitterness that can occur in the aftermath of failure (“heartbreaking”, "feeling broken”, “it's not worth it”, “waste of money”). This highlights the need for counseling and patient expectation management during the infertility treatment journey and for patients and their partners to come to terms with an unsuccessful outcome. In a study by Pasch and colleagues, most patients reported that their clinics did not provide information about mental health services or support. 36
Assessment of clinic staff's commitment to patients receiving timely and adequate emotional support (eg, through referral and outreach) may warrant further investigation. Additionally, increased education (eg, in universities as part of a health education curriculum or as training in clinics) may be useful to close patient knowledge gaps about declining fertility with age and certain medical conditions, and create realistic expectations about the nature of, and timelines associated with, infertility treatment.
It is plausible that the few Black respondents may have been more likely to respond due to their dissatisfaction and discontinuation, and as a result, these responses may not be generalizable to the broader Black population of infertility patients. Of note, Plowden and Paulson 37 emphasized the dramatic disparities in health equity for Black and Native American patients that occur in gynecological health; ie, less successful outcomes in gynecological cancer 38 and inferior reproductive health outcomes. 39 As such, racial disparity continues in infertility care 37 and requires further investigation.
Limitations
There are several limitations to the survey. Respondents did not answer all questions in the survey. While the majority of patients lived in a household with children, the question of biologically related children or not was eliminated from the survey. Based on experts in infertility psychology, there was concern the question may trigger discontinuation of the survey. While we adjusted for age, race/ethnicity, annual household income, current parental status, insurance coverage for infertility services, patient expectations, treatment plan received from an endocrinologist, there may be other confounders due to the similarities in the demographic data. Most respondents were White; data on patients of other races and ethnicities were limited. Consequently, the survey population is not representative of the entire US population. This is consistent with a report indicating that the use of infertility services is disproportionately higher among White women (85.5%) compared with women belonging to other racial groups. 40
Conclusions
Patient dropout or discontinuation prior to achieving a viable pregnancy is a significant issue during infertility treatment and impacts the patient experience.13,14 Patients undergoing infertility treatment experience substantial psychological burden and treatment fatigue, which may be exacerbated by a mismatch in the expected versus actual time needed to achieve a pregnancy and subsequent live birth. Increased access to counseling during infertility treatment may ease this burden and encourage more women to persist with treatment. These results indicate a need for informed discussions between clinicians and patients to acknowledge that fertility care can be a lengthy process, set realistic expectations for infertility treatment outcomes, and allow couples to physically, emotionally, and financially plan for the patient journey.
Supplemental Material
Supplemental material, sj-docx-1-jpx-10.1177_23743735241229380 for Identifying Factors Associated with Discontinuation of Infertility Treatment Prior to Achieving Pregnancy: Results of a Nationwide Survey by Barbara Collura, Brooke Hayward, Krysten A Modrzejewski, Gilbert L Mottla, Kevin S Richter and Allison B Catherino in Journal of Patient Experience
Acknowledgments
The authors thank Lindsay Craik (Caudex, New York, NY USA at the time of writing) and Brooke Bouza, PhD, Caudex, New York, NY USA for providing medical writing and editorial assistance in the preparation of this manuscript, funded by EMD Serono (CrossRef Funder ID: 10.13039/100004755). The authors would like to acknowledge Grace Macalino and Morgan Byrne for statistical analysis support. All authors agreed to the medical writing and editorial assistance. Additionally, Caudex, funded by EMD Serono, provided submission support of the manuscript on behalf of the authors.
Footnotes
Data Availability Statement: Any requests for data by qualified scientific and medical researchers for legitimate research purposes will be subject to EMD Serono's Data Sharing Policy. All requests should be submitted in writing to EMD Serono's data-sharing portal https://www.emdgroup.com/en/research/our-approach-to-research-and-development/healthcare/clinical-trials/commitment-responsible-data-sharing.html. When EMD Serono has a co-research, co-development, or co-marketing or co-promotion agreement, or when the product has been out-licensed, the responsibility for disclosure might be dependent on the agreement between parties. Under these circumstances, EMD Serono will endeavor to gain agreement to share data in response to requests.
Declaration of Conflicting Interest: The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: BC is an employee of RESOLVE: The National Infertility Association, McLean, VA USA, and has received research support from EMD Serono. BH, KAM, and ABC are employees of EMD Serono, Rockland, MA USA. GLM is an employee of Shady Grove Fertility Center, Annapolis, MD USA, and has received research support from EMD Serono. KSR is an employee of Fertility Science Consulting, Silver Spring, MD USA, and has received research support from EMD Serono.
Ethical Approval: Ethical approval to report this case was obtained from The New England IRB Needham, MA Institutional Review Board (#6736).
Funding: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study and manuscript preparation were supported by EMD Serono (CrossRef Funder ID: 10.13039/100004755).
Statement of Human and Animal Rights: All procedures in this study were conducted in accordance with The New England IRB Needham, MA Institutional Review Board (#6736).
Statement of Informed Consent: When participants opened the online survey, they were told their participation was completely anonymous and 100% voluntary and by clicking forward to the survey they were giving consent to collect and analyze their survey question responses.
ORCID iD: Barbara Collura https://orcid.org/0000-0003-3271-7762
Supplemental Material: Supplemental material for this article is available online.
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Supplementary Materials
Supplemental material, sj-docx-1-jpx-10.1177_23743735241229380 for Identifying Factors Associated with Discontinuation of Infertility Treatment Prior to Achieving Pregnancy: Results of a Nationwide Survey by Barbara Collura, Brooke Hayward, Krysten A Modrzejewski, Gilbert L Mottla, Kevin S Richter and Allison B Catherino in Journal of Patient Experience