How to Increase IVF Patient Retention an Interview with Dr. Alice Domar

In this episode, Griffin talks to Dr. Alice Domar, a psychologist and the co-creator or Ferticalm and Fertistrong apps. After many studies, Dr. Domar concluded that the infertility practices needed to become more patient centered care in order to reduce the dropout rates of those patients who have insurance. The number one reason for infertility patient dropout is stress. Reducing that stress can help patients to stay in treatment and then in turn help practices to keep business up.

Some stats:

13% of patients drop out because physician recommended it.
50% drop out because of emotional burden

Of those who drop out:
40% said it was too stressful
25% said they couldn’t afford the out of pocket cost,
25% said they lost insurance coverage
24% said they conceived spontaneously

Of those that said stress was the reason they dropped out, the top sources of stress were:
65% already having given IVF their best chance
48% feeling too stressed to continue
36% said infertility was taking too much of a toll on their relationship

Griffin: Today I’m with Dr. Alice Domar, PhD, who is the executive director of Mars center, for the mind body health center, and the director of mind body services at Boston IVF. She established the very first ever mind body center for women’s health. She has been a guest on Dateline, CNN, PBS, CBS, Good Morning America, among many others. She is a board member of a number of organizations, including but not limited to, Resolve- the national infertility association, and she has helped launch the apps Ferticalm and Fertistrong. Dr. Alice Domar- Ali- Welcome to the program

Domar: Thanks Griffin, nice to be here.

Griffin: I brought you on for the specific purpose because you and I have been on the circuit for the last few years speaking at conferences, and very often I’m talking about how to get patients and you’re talking about how to keep them. You’ve done a lot of research and even though i’ve heard you speak probably six or seven times, I often find some of the research to be surprising to me or counterintuitive, and nobody knows it better than you, so today i want to talk about drop out, about patient retention, about training for providers and staff and the reasons why patients drop out and what we can do to keep them.

Domar: Yup, that’s been my research focus for about four years now.

Griffin: How did you start with that? If I’m looking at things purely from a business perspective I would interested in that, because there’s a case for bringing people in the door and then you want to make sure that they stay. Also from the standpoint of producing the best treatment and help people if you can’t help them.

Domar: I think the first time I became aware of the epidemic of dropouts in our patient population, was actually Fertility and Sterility came to me in 2004 and they were about to publish four studies out of Europe, all of which looked at reasons for insured patients to drop out. They asked me to read all four and write an editorial. That was actually the first time the issue came to my attention. Until 2004 i assumed what everyone else assumed, there are only three reasons patients drop out of treatment- number one is pregnancy which is a very good reason, number two is because the physician said, your prognosis is too poor, you need to consider donor egg, donor sperm, whatever, but i’m not going to have you go through another cycle using your eggs or your partner’s sperm. So that’s physician censoring. The third reason is money. Much more common in the US because much more patients in Europe have coverage, but there are patients who run out of coverage too. So everybody assumed and wrote about those three reasons for drop out.

However, what all four studies that came out in 2004 showed, in fact patients who don’t have insurance the number one reason they drop out is money. There are patients who have the means and keep recycling, but patients who can’t afford it either don’t start treatment or drop out and there’s not a whole lot you can do from a psychological perspective. What was really shocking about all these studies was how incredibly rare it was for patients to drop out because of physician censoring. On average only about 13% of patients drop out because physician recommended it. The number one reason of all four studies was stress. It is now called the emotional burden of care. Patients very consistently reported that stress was the number one reason why they dropped out.

Griffin: So physician censoring is about 13% and that’s lower, what is the emotional burden of care registering at?

Domar: I think for most of the studies it was about 50%. It was far far higher than the physician censoring.

Griffin: is emotional burden divided into subsegments at all? Like depression or anxiety or stress between partners?

Domar: in those early days, no. They gave you a list, and it was really the burden of care that was the answer. I then did a small study after that because I was curious to see if i would find the same result in the US. We did a small study where we followed patients at Boston IVF who dropped out, who did have insurance, and once again, the number one reason for dropout was stress. We asked a little bit about the stress but it wasn’t that detailed. So fast forward, it was about four years ago, I had been spending most of my career looking at the impact of psychological interventions on distress and pregnancy rates, and about four years ago, a meta analysis out of Europe came out that once and for all proved that psychological interventions decreased the stress and improved pregnancy rates. I thought okay, now there is a meta analysis, I don’t need to spend my time clinically doing this. So four years ago I focused all my research on dropout rates. Because Boston IVF is so huge we actually started to look at our database. So we did a study of about 11,000-12,000 patients, who had cycled at Boston IVF, it was published last June, and we found once again, the number one reason was stress. We did break it down, and I believe a big component was the impact of the treatment on their relationship.

Griffin: Treatment of their relationship with staff, with providers…?

Domar: No, the impact of the treatment between the partners, within their marriage. In that study, we had a large number of patients, we were able to come up with more definitive information. What was surprising to me was, yes burden of care, stress was number one, but what was really surprising to me was, at Boston IVF we have a mandate where six IVF cycles are covered for most people. And we only looked at people who have insurance coverage, but a relatively close second reason for dropouts was the copays. Someone from CA or NY who is paying $15-20,000 for a cycle is going to laugh at someone from MA, who is paying maybe 20% copays or paying for their medication, but it was still a big factor. Not as big as stress, but it was still a factor.

Griffin: this might be a rabbit hole, but is there a psychological factor of some in there. To your point in other states its much higher, maybe it's not equally as high but if it’s still significantly high in mandated states, simply the sump cost, of feeling like this is not going to work out or hasn’t worked out, it's good money after bad, do you have a way of anecdotally hypothesizing on that.

Domar: I think what’s interesting in MA, because we have this mandate, people have an expectation that their cycle will be fully covered. I know if you look at the Mind Body program I run, I’ve taught people all over the world, how to run the mind body program. At Boston IVF, because of all sorts of bizarre insurance things, patients have to self pay for the Mind Body program. So Boston IVF has made the decision to make it almost like a loss leader because it provides so much to patients. The program is $495 which is not a huge amount of money. Now I taught someone in CA how to run the program, and they charge $2,000 for the program and they have an even busier time filling their groups than we do. Because I think it California people think, okay, its $15,000 for an IVF cycle what’s another $2,000 for the mind body program, verses in MA there’s this expectation that everything will be covered and I can’t possibly pay $500 for the program. So some of it is psychological, or that it’s simply because of the mandate and people of all socioeconomic backgrounds are able to do IVF so $500 for some people is a massive amount of money and they just can’t do it. Perhaps that’s why copays are such an issue here. It really is stress though and I think every study I know of that has looked at the dropout rates of insured patients, emotional stress is consistently number one.

Griffin: So when we say dropout rates from either the Boston study or the European study, are we talking about people that have discontinued with that provider, is there any follow up to see if they went to a different provider? Because I wonder what that percentage of people was?

Domar: In Europe because there is national health care, it doesn’t matter what provider you see, they know whether or not you’re doing another treatment cycle. At Boston IVF we actually did this by hand. When a patient seeks to move to a different clinic, they ask for their medical records. So we know whether or not they are seeking at a different provider. Plus with the last study we did in June, we actually asked them if they switched clinics. We only looked at patients who were pure dropouts.

Griffin: What are benchmarks for some clinics though? The number of people who are dropping out of treatment that don’t necessarily need to be?

Domar: What’s really sad is most clinics don’t track it. You know how you mention that clinics spend so much money to get a patient to walk in the door?

Griffin: They don’t track that either by the way, which drives me crazy.

Domar: Well, I can tell you that most clinics in this country have a significant marketing budget, they often have sales reps, they create relationships with referring OB GYNs and primary care physicians and it costs a lot of money to bring the patients in the door, and that first visit and work up is very labor intensive. Once the patient’s in the system, it doesn’t cost very much to do each IVF cycle. Once they are started it doesn’t cost very much to keep them, to go through the cycle each time. So you’d think, that clinics would be incredibly motivated that once a patient sees a physician, to keep that patient as a patient, through their treatment cycles. And yet I think there is very little effort throughout the world to keep patients in treatment. This whole new concept is called patient centered care, and it sort of started in Europe and I can describe all the research on patient centered care, but i think the problem is we don’t really know what patient centered care is in our patient population.

Griffin: When you say you don’t really know what patient centered care is within our patient population, what do you mean?

Domar: So basically we ended up with 893 insured patients who did one IVF cycle and did not return for treatment for at least one year and they didn’t achieve a live birth. 2/3rds of them did not seek care elsewhere. When we asked them why they dropped out, 40% said it was too stressful. 25% said they couldn’t afford the out of pocket cost, 25% said they lost insurance coverage, and 24% said they conceived spontaneously. Of those that said stress was the reason they dropped out, the top sources of stress were already having given IVF their best chance at 65%, feeling too stressed to continue 48%, and 36% said infertility was taking too much of a toll on their relationship. We then asked them, what could we have done to make your experience better, what could we have done better to keep you in treatment, and the most common suggestion were to offer evening and weekend office hours and to give easy access to a mental health professional.

Griffin: To clarify then, when we talk about dropout rate, we talk about people who have had an IVF cycle. We’re not even talking about people who have come in for a consult and never pursued the prognosis.

Domar: Right, these are pure IVF patients. I believe a study out of Europe came out recently that showed that 2/3rds of insured patients who have come in for an initial consult dropout before their first IVF cycle. So most of the dropouts happen before their first IVF cycle. So that’s in fact where the hemorrhage starts. It is getting them from their first visit to their first IVF cycle.

Griffin: That’s a huge hemorrhage in and of itself.

Domar: One thing we looked at at Boston IVF is how many patients come for the first consult and don’t come back. I believe the results were about 23 or 24 percent. So that’s a huge hit. That’s much higher than the European data. Only 6% dropped after the first visit.

Griffin: A Lot of this is when in your talks, people are surprised to hear that emotional burden of care is much more prevalent of a reason than cost and other reasons.

Domar: No, no, we’re only talking about insured patients. For uninsured patients, cost is the number one reason.

Griffin: Okay, that’s a good clarification. What has surprised me the most in your talks is the success or the lack thereof of different interventions. So talk to me about the different interventions that you’ve tested.

Domar: You want to hear something really shocking? As far as I can tell, there has only been one study to look at an intervention to decrease dropout rates and I did that study. Two different schools of thought, I can tell you what they are doing in Europe and I can tell you what our study showed. Starting with Europe- they have done a lot of work trying to identify this whole concept of patient centered care, there are a lot of studies across the continent trying to figure out what patient centered care is. So this is the story that i’ve followed, so they’ve done multi country studies, and what is really interesting, very close to 100% consistency in terms of what they want for patient centered care. The things they say they want don’t make sense. Of the top five one of them was more information about the semen analysis, more information on the impact of BMI on outcome. None of which makes sense to me as a psychologist. So what they did in these studies, they identified five factors that these patients said they wanted changed to be more patient centered. Then they did a couple of randomized controlled trials where they made those changes in half the clinics and didn’t in the other half and there were no difference. So what patients say they want doesn’t necessarily translate into better care.

The only study I have been able to find which dramatically changed patient perception of care, was a study done out of Spain. What they did was published in 2013 in FNS. What they did was an overview of 2000 patients about their perception of care, it was right after my first visit, and then they took their 13 physicians and make the go to a weekend retreat to train them in an empathic skills communication. I’m bedazzled by that. Anyone who can convince 13 physicians to spend a weekend learning empathy skills communication, that’s a really good center. After the training they then reassessed patient’s perception of care and patient perception of care skyrocketed. So much so that now at the clinics, every employee from receptionist, all the way to physicians gets trained in empathic communication skills. I have now been trained as someone who teaches empathy skills communications, but as far as I know there is no clinic in the US that has actually decided to train anyone formally in empathic skills communication. I do think that teaching healthcare professionals in our field in empathic skills communication would be a huge key to unlock the perception that we can’t change patient centered care. I think we do need to train them formerly in how to provide empathetic care.

Griffin: What does the training entail?

Domar: The company that I worked with is called by Empathetics, and is based out of Mass General and is actually based on randomized controlled trials with physicians, and they’ve really streamlined it. So with physicians they need to do three one-hour online trainings where they get CME’s and then one hour of live training with me. For nurses it's a one one-hour video and one-hour live training, but no one as far as I know has decided to do this. It's a relatively small investment financially, in our experience its very reasonably priced, but the downside is the training that they offer is not REI specific. It's just general physician skills. I’ve done the training on both, and its how to tell a cancer patient a bad prognosis, how to tell a diabetes patient how to be compliant. It's tough to get REIs to watch these kinds of videos. But a live training would be tailored just specifically to REI situations.

Griffin: I can speak to how important this is because our company handles reputation management for a lot of clinics and i've also done a lot of research, and I’ve gone through thousands of reviews in my analysis over the years, and the way it comes out is so clear, the patient’s reward in empathic communication, and the way they perceive it as not being empathetic it can really take a turn that ends up being a PR headache or a series of negative reviews that really upset physicians.

Oftentimes I’ve written about the triggers that people say back to them, one thing that i could imagine would be beneficial for empathetic training would be talking about prognosis for how you’re going to lower BMI before moving on to another prognosis. We can perceive that as “he called me fat” he told me i was too fat to ever get pregnant and that’s how it's related online. Or if it’s about advanced maternal age or ovarian reserve, he told me i was too old, so what’s this like when you pitch this idea of empathic skills?

Domar: I think there needs to be an RCT looking at the impact of training physicians and nurses in empathic skills communication, not just looking at the impact on patient perception of care, but looking at the impact on dropout rates. I think if you could do such an RCT showing that the training directly translates into lower dropout rates, you would have very valuable product.

Griffin: To begin with that, you would first need to know how many patients are dropping out in order to be able to make that decision about return on investment and justify that decision based on return on investment measure at the very least, as you mention, we don’t have that in place. They may think that they have a handle on dropout rates, they may say it’s about this much, but to your point when you ask them can I look at the data, they don’t have that.

Domar: When I got that first study funded, i wanted to just look at our dropout rates and see why, and it was funded by MERC, and I remember the day i found out i got the grant we had a physician dinner and one of the physicians said to me what’s new and I told him about the study and the physicians answer was our patients don’t drop out of treatment, i see patients all day, they don’t drop out. My answer was, because you don’t notice. The patients that you remember are the ones you keep on seeing. The patients who drop out, you don’t notice it. And so we have to start noticing it. Certainly Boston IVF and a lot of the big clinics are tracking dropout rates pretty carefully, and now we are doing lots of patient surveys and every month I get a printout of all the comments patients make. Last year I did a TED variation talk on Halloween and I talked about patient dropout rates and how to retain patients and how its not pregnancy rates.

Studies show that patients prioritize patient centered care over pregnancy rates. Do physicians think that patients prioritize pregnancy rates, they don’t. I gave this TED like talk and was reducing all this data, and I was like we need to start paying attention to patients that are dropping out so for this talk i looked at the top ten biggest clinics in the US. I looked at online patient comments, and they were frightening, for everyone. So in my TED talk I did a slide with examples of all of these comments and almost all of them came down to communication issues with the patients and nurses and physicians and the patients just don’t feel that they are being cared for or being heard.

Griffin: We talked about a similar overlap with Rebecca Flick on an earlier episode which is, at some point the digital technology which used to be marketing sort of overlaps with this and as we move into getting everything else instantly…. Something of 90% of people open a text within 10 minutes, contrast that with what clinics are able to provide and how quickly they are able to get information, that ultimately affects patient centered care.

Domar: I’ve been doing talks all over the country for the last five or six years and I have been giving a talk about the importance of empathic skills communications and now i’m doing a talk on patient centered care. One of the issues i’ve been talking about that nurses have been reporting to me is that millennials expect to get information instantly. And so you hear constantly well i called the nurse at 9:05 and now it’s 9:20 and no one has called me back. Or i’ve had my blood drawn at 7:30 and by 9:00 no one has called with my results.

Griffin: we got these on social media, we’ll get a Facebook message and I’ve called and a Instagram message saying I just Facebooked you guys…

Domar: It’s the instant thing. The one RCT that looked at dropout rates, so we got another study funded from MERC to look at can a psychological intervention change dropout rates. We recruited 160 women who were about to do their first IVF cycle who had insurance at Boston IVF and we randomized them. Half of them got routine care, and the other half we mailed them a packet. In this packet were two different forms of intervention, one was a cognitive coping sheet. Here are things you can do when you go to the waiting room to distract yourself. Or these are things you can do when waiting for test results. We had one series of suggestions for the stimulation phase and one series of suggestions for the waiting phase. We also had relaxation strategies, for the stimulation phase the instructions on how they could do mini relaxation exercises. They could use before a blood test or an injection.

For the waiting phase, included in the packet was a CD that had my voice leading them in several different forms of relaxation techniques. So all we did with the 75-80 intervention patients, we mailed them a packet. We don’t know if they used the packet, we just mailed it to them. Then we followed them for a year. What we found was the patients who got the packet, we don’t know if they used it, but their depression and anxiety scores were significantly lower than the control group. The control group had a 15% dropout rate, the intervention group had a 5% dropout rate.

Griffin: So three times as many.

Domar: So we reduced the dropout rate by 67%. We published this study in FNS and one clinic asked us how we could get that packet. When I presented this to the business managers, at the break pretty much everybody gave me their card and said how can I get the info on this packet. It’s crazy. If i stood up and said this drug that costs $12 is going to reduce your dropout rate 67% don’t you think they all would have said “where can I get this drug?” the packet cost us $12 to make.

Griffin: Is that packet the CD, the mailing out, and presumably the difficutling of that being adopted, is that the genesis of the apps you made?

Domar: Yes, that’s exactly right. I consider that packet to be a very small intervention. There was some cognitive coping methods, but millenials don’t like to read stuff, they like to look at stuff on their phone. Soon after the results came out, a psychologist at Cornell said everyone of my patients want something on an app that’s directed to infertility patients. Everything out there is general and have nothing to do with infertility. We sketched out Ferticalm on a napkin. Ferticalm has 100 times more power and information than the packet did.

Griffin: What was it like working with developers? Was that your first time working with software developers?

Domar: It’s really funny, 8 years someone wrote an article in the Atlantic Monthly and the title of the article was “Women Can’t Have It All.” Liz and I, she’s my business wife, we want to write the Atlantic Monthly about what it was like for the two of us to start a business together, two psychologists who have no technical background, no business background, no legal background, both clinicians, both mothers, both pet owners. We have so many insane stories. One night we had a conference call, and it happened to be a night when my daughter had to make hammantoshin to bring to school. Literally with my phone next to me on this conference call on the creation of the first app while my daughter and i made 266 hamantoshin, like little pastries. We had some help at the beginning, Jake Anderson and Deborah Bealis, who founded Fertility IQ, I’ve been friends with them for awhile. They had given us some ideas on how to talk to developers. One of our physicians, Steve Bayer, he knew of a startup in Boston that did app creation, they were the ones we went with and it was, if we talk about steep learning curve, this was Mount Everest, it was crazy that Liz and I are therapists and we had to write the content that would create an app. We lucked out along the way, we had this amazing developer, we found this incredible designer, we learned everything the hard way.

Griffin: It’s the only way to do it! I think that’s really incredible. It’s something that providers, practices, admin, nurses, can direct their patients to.

Domar: Both apps are free, throughout America and Canada, and it’s about to launch in Latin America, it’s available in both English and Spanish. It’s interesting because, Ferticalm has been very well received. I talked to my patient last week and suggested she download it and she came in yesterday and said oh my gosh, i’m just using it all the time. I remember last year there was a presentation, and I was asked to give a talk about psychological interventions for infertility patients, and i decided that it would be improper for me to mention ferticalm. I thought it would be obnoxious for me to mention it. I’m in my talk, there are maybe 60-80 physicians there, and i’m talking about all the interventions, in the middle of my talk, one of them stood up and interrupted me, and said, you are doing the audience a disservice, have you ever heard of this app, Ferticalm? And I’m like, yeah, i have. She said it's incredible, I have all my patients download it, and she later told me that whenever she has to do anything painful she meets the patient, has them download it on their phone, listen to one of the relaxations and then she does the procedure, and its made a huge difference for her because the patient has less pain.

Griffin: that is the perfect application for it too.

Domar: it is but it’s also, for my patients, what do you do if it’s 11 pm and you’ve just done your first IVF cycle, and its day 27 and you start bleeding. You know, you’re freaking out of your mind, can’t call your doctor, your partner doesn’t get why you’re upset, and you go to Ferticalm and you find that exact situation, and there are six cognitive behavioral relaxation techniques to calm you down in the moment. I don’t get paid for downloads, so I can talk about it. It's something that patients can use and its the only thing out there. Liz and I came up with 50 different situations that could come up and what they need in that moment to feel better.

Griffin: And anybody who has ever looked at the trying to conceive hashtag on Instagram knows that people are begging for these answers and that application is really contemporary way of being able to meet people where they are at. One big question that I have that I feel practice owners should know is because whether they agree with us or not, you and i both agree that they are not tracking dropout numbers.

Domar: Some clinics are, I know Boston IVF tracks it, I know a number of large centers are tracking dropout rates.

Griffin: But many aren’t, so those that aren’t, how do they start? How do they implement the system?

Domar: Pretty much everyone these days does EMR, and you can look at return rates. We have been doing options of this research so for example, our scientific director, came to me about two years ago and said to me, what's the relationship between age and dropout rates? I said women over 40 have the highest dropout rates. That makes sense because their prognosis is the worst, but does that mean women in their 20’s have the lowest dropout rates? I said no one has ever studied that. We went and did a study and looked at dropout rates of women in their 20’s, 30’s, and 40’s. And we published that.

What we found was not to our surprise, that women in their 40’s had the highest dropout rates, but women in their 20’s had the same rate of dropout as women up through age 39. So a 26 year old who has a phenomenal prognosis has the same dropout rate as a 38 year old, and it doesn’t make sense. I don’t know why these young women dropout. It might be because they figure they can dropout for a few years and get psychologically stronger, and come back, or it might be that because they are so young they just don’t have the coping skills. They just don’t know how to handle these negative cycles. Or it could be the physician and nurses haven’t adequately communicated to them how good their prognosis is. Whatever the reason we need to educate our younger patients in a very different way. We need to support them more and we need to make sure they know their prognosis. A 26 year old should not dropout of treatment.

Griffin: A good place to start to get the hard numbers of what it is in your practice would be the EMR.

Domar: Yeah!

Griffin: Dr. Alice Domar, it has been a pleasure having you on our inside reproductive health, is there anything you want to share with the audience that i didn’t ask you before i let you go

Domar: I feel that if we can figure out the best way to keep patients in treatment, it's a win win. I’m a psychologist, so i don’t make money keeping patients in treatment, but for me it's all about if patients stay in treatment they are much more likely to get pregnant and have a baby. That’s what we want for all our patients, to get pregnant and have a baby. I think for clinics it's about patients staying in treatment so they make more money, and so it's a win win for everyone. If patients stay in treatment they are far more likely to get pregnant and have a baby, which makes the patient happy, and along the way it makes the clinic happy as well.

Griffin: Ali, thanks so much for coming on the show, I loved talking to you.