IVF Dropout Rates Are Too High: How Support and Navigation Can Change That.

“I can’t do this anymore. It is too hard.”

IVF drop out rates mean tens of thousands of people quit before having a baby.

This is something almost every single person who has gone through IVF has said to themselves or a loved one. It is understandable why someone would think this. Despite wanting so desperately to have a child, the mental, emotional, physical toll of IVF treatment can be too much.

In the end, too many people stop IVF before having a baby. Every person in the fertility industry knows this. The question is why and what can be done about it?

To first know why and what can be done, we need to understand what the actual rate is, which is not well understood.

There are a few published studies that look at this topic, but what has been surprising is that many clinics do not do a good job of:

1. keeping track of how many patients drop out and

2. why they drop out.

The reality is it is really hard to get information from someone when they leave a clinic. Most people don’t want to tell a business why they stopped using their product, especially when it is a difficult manner like trying to have a child.

We believe getting at these root causes can help solve some major problems for both patients and clinics.

Driving down the IVF dropout rate can help increase the number of individuals and couples who have a successful live birth. We know this because data shows the cumulative prognosis-adjusted live-birth rate across all cycles was 65.3% of women achieving a live birth by the sixth cycle (1). This number is slightly higher (68%+) for women under age 40. This means if we can simply get someone to this number of cycles, we give them a good chance at success.

It is good business for clinics to have their patients successfully give birth. While having longer duration patients will decrease the overall cycle success rate for a clinic (a metric measured by the CDC and SART), it increases the total number of cycles performed by a clinic and increases their total patient live birth success rate.

The Real Numbers Behind the Dropout Crisis

There are a few studies that examined the number of patients that quit IVF. More importantly, it is essential to understand how many of these patients quit of their own volition, and not due to medical or financial reasons.

A late 90s study from the Netherlands found that the cumulative dropout rate after 3 cycles was 62%, and only 13.9% of these patients quit due to reasons outside of the patient control (2). Another study found that the overall dropout rate of Boston IVF patients in the United States was 34% (IBID). Another study showed 25% of patients discontinued fertility treatment without a pregnancy (3).

The wide range of dropout rates, averaging an approximate 35.5% dropout rate for patients, shows a few things. Even if these numbers are high, it is safe to say that over 1 in 4 people will quit IVF before having a baby due to non-medical or financial reasons. This means that of the over 400,000 IVF cycles performed in the United States and approximately 175,000 women undergoing IVF, around 43,750 of them will not have a baby.

Imagine the entire crowd of Citizens Ballpark, home of the Philadelphia Phillies which fits 42,901 people, going through years of treatment, spending tens of thousands of dollars, and not having a child.

This is how many people go through IVF every year and quit before having a baby.

Thinking of this another way, this means that in the US alone, we can estimate over $2.8 billion is spent on IVF journeys that end without a child (average cost $21,600 total per cycle + 3 cycles average + 43,750 people quitting).

Most People Don’t Quit IVF Because It’s Not Working or Costs Too Much—They Quit Because It’s Overwhelming.

But what do people quit? Esteemed researcher Alice D. Domar, Ph.D, says

“many health care professionals have the impression that IVF treatment is terminated for only three reasons: pregnancy, cost, or the refusal of the physician to continue treatment because of a poor treatment response or prognosis (active censoring)...However, research has shown that, in fact, a significant number of patients terminate treatment of their own volition and not for financial reasons."

There has been so much talk recently of bringing down the cost of IVF in order to increase access and the declining birth rate, and while it is essential that we do this, it is important to focus on the main reasons people quit and address these root causes.

Studies have shown that a majority of patients who quit of their own volition do so for several reasons (4,5,6):

• the psychological burdens of treatment (classified as taking too much of a toll on a relationship or too anxious or depressed to continue),

• postponing treatment,

• emotional distress,

• financial,

• Organizational issues,

• and issues with their clinic

Understanding the actual burdens of fertility treatment extend beyond the direct impact on medical care and follow a patient into their daily life. Recently, Maven Clinic published data that showed the impact fertility care has on a woman’s workplace and the data was striking. The study showed that 77% hid or downplayed fertility treatments at work, 44% turned down promotions, raises, or new job opportunities due to treatment schedules or concerns about future family planning, 91% said fertility challenges impacted their mental health, 59% of women or their partners took on extra work to pay for care (7).

It is also important to understand when someone drops out in addition to why someone stops treatment. This is harder data to come by but one study (8) showed the following stages of discontinuation:

• Stage I (immediately after first visit)- 6.0%

• Stage II (during diagnostic workup)- 3.4%

• Stage III (after finishing diagnostic workup but before treatment)- 35.7%

• Stage IV (during or after non-IVF treatment)- 23.5%

• Stage V (during IVF)- 17.9% and

• Stage VI (after at least 3 cycles of IVF)- 13.5%

From the early stages of infertility treatment, data shows an immediate impact on patient mental and emotional health, taking a toll on their lives and adversely impacting their ability to maintain the lifestyle they had before treatment. It is why so many patients say infertility takes so much from you. It changes who you are because it impacts your schedule, your physical health, your relationships, and your finances.

What Could Keep Patients Going?

So what can we do to help decrease IVF dropout rates and increase the total number of live births via IVF? At Grain Fertility, we believe that providing patients with the support and resources from diagnosis and continuing through the fertility journey to live birth is one way we can help to decrease dropout rates. This is achieved several ways.

Better explanation of what to expect

Patients consistently tell us how overwhelmed they are by the process. It is simply too much to expect a patient who is struggling with a traumatic diagnosis such as infertility to also remember every detail they are given and adhere to a complex process. To address this, Grain Fertility patient empowerment coaches provide detailed explanations of what to expect throughout the journey, providing overviews of major procedures, making sure patients understand the steps they are required, and contextualizing their doctors decisions to help them make sense. We find this immediately helps to reduce the overwhelming nature of the treatment, helping to minimize some of the main contributors to drop out.

More support between appointments

While Grain Fertility coaching is built around preparing for milestones that induce the most anxiety and elicit the highest number of patient errors (such as trigger shots, retrievals, or transfers), we offer support to patients between their appointments, focusing on Stage III of the treatment process, which has the highest percentage of dropoffs. We believe by supporting a patient, helping address their concerns, and answering their questions, we can get a patient through the hardest parts of treatment and increase their chances of achieving a live birth.

Organization and tools that reduce mental load

While organizational issues are not a top contributor to patient drop out directly, we strongly believe it is a contributor to the overall toll it can take on a person, is a contributor to emotional distress, and an overall contributor to dropout. How anxious are you when your office is messy or your house is overflowing with bills and documents? There is a reason Marie Kondo’s organizational methods became so popular. We believe that by balancing a person’s desire to have the information they need, when they need it with the ability to keep it out of sight when they don’t, they can more effectively handle the impact treatments have.

What Grain Fertility Does to Help

Grain Fertility was created by patients and fertility professionals who understand the real burdens treatment places on people. Everything we do is designed to reduce that weight, so patients are more likely to stay in care and reach their goal of having a child.

Comprehensive support is at the heart of our offering to fertility patients and clinics. Our one-on-one Patient Empowerment Coaching gives patients direct access to experienced fertility nurses who guide them through each step. We don’t replace clinical teams, we complement them. Coaches help patients understand procedures, prepare for milestones like trigger shots and retrievals, and clarify next steps after doctor visits.

We also provide an easy-to-use app to keep key information such as medication instructions, insurance details, questions for the clinic in one place. It reduces the stress of managing treatment logistics and helps patients stay on track.

Patients also receive personalized resources tailored to their treatment stage. Whether you’re about to start stimulation meds for the first time or considering what comes after a failed transfer, we help you prepare mentally and emotionally for what’s ahead. That preparation makes a difference.

By combining experienced coaches, practical tools, and resources tailored to the IVF process, we help reduce the feelings of confusion, burnout, and anxiety that drive patients to stop treatment too soon.

Empowerment Keeps People In Treatment

When patients understand what’s happening, feel confident in their ability to manage the details, and know they have someone in their corner, they’re far more likely to stay the course. Support doesn’t change your diagnosis, but it changes your ability to face it.

It’s clear that many people are not leaving fertility care because of medical failure or even cost. They’re leaving because the process is too hard to navigate alone. We believe that knowledge plus support leads to confidence and confidence keeps people in treatment.

That’s why Grain focuses on empowerment. We help patients take the next step, even when it’s hard. We do this because every step brings them closer to the goal they’ve been working toward.

If you’re a patient and want to learn how coaching can support your journey, schedule a free discovery call.

If you’re a clinic leader looking to improve retention, patient satisfaction, and outcomes, we’d love to talk about how we can partner together.

Grain Fertility Helps Support Patients and Clinics.

Citations:

1. Smith ADAC, Tilling K, Nelson SM, Lawlor DA. Live-Birth Rate Associated With Repeat In Vitro Fertilization Treatment Cycles. JAMA. 2015 Dec 22-29;314(24):2654-2662. doi: 10.1001/jama.2015.17296. PMID: 26717030; PMCID: PMC4934614.

2. Alice D. Domar, Ph.D., Kristin Smith, Lisa Conboy, Sc.D., Marie Iannone, M.S., and Michael Alper, M.D. A prospective investigation into the reasons why insured United States patients drop out of in vitro fertilization treatment. Fertility and Sterility Vol. 94, No. 4, September 2010.

3. Collura, Barbara et al.Factors associated with a patient’s decision to discontinue fertility treatment before achieving pregnancy.Fertility and Sterility, Volume 112, Issue 3, e400

4. Domar et al. A prospective investigation into the reasons why insured United States patients drop out of in vitro fertilization treatment.

5. Gameiro S, Boivin J, Peronace L, Verhaak CM. Why do patients discontinue fertility treatment? A systematic review of reasons and predictors of discontinuation in fertility treatment. Hum Reprod Update. 2012 Nov-Dec;18(6):652-69. doi: 10.1093/humupd/dms031. Epub 2012 Aug 6. PMID: 22869759; PMCID: PMC3461967.

6. Collura, Barbara et al.Factors associated with a patient’s decision to discontinue fertility treatment before achieving pregnancy.

7. https://www.prnewswire.com/news-releases/maven-clinic-study-pulls-back-the-curtain-on-the-staggering-financial-and-emotional-costs-of-fertility-care-302431182.html?tc=eml_cleartime

8. Brandes M, van der Steen JO, Bokdam SB, Hamilton CJ, de Bruin JP, Nelen WL, Kremer JA. When and why do subfertile couples discontinue their fertility care? A longitudinal cohort study in a secondary care subfertility population. Hum Reprod. 2009 Dec;24(12):3127-35. doi: 10.1093/humrep/dep340. Epub 2009 Sep 26. PMID: 19783833.