Advocating for Yourself: Finding a Good IVF Clinic

March 21, 2013Carole 6 Comments »

Here’s the thing. As an infertility patient, you have one thing going for you that other patients don’t have. Infertility clinics are required, by US law, to report their annual pregnancy outcomes to the CDC, either directly or via an intermediary, namely the Society for Assisted Reproductive Technology (SART). What troubles me is that–at least based on the emails I get– not all patients take advantage of this tool to find good IVF providers.  Instead, they rely on advertising or word of mouth to find a clinic. Those can lead you to a good clinic but they can as easily lead you to a mediocre or even terrible clinic. Sometimes patients confuse friendliness with quality. Good “bedside” manner is fine but that  doesn’t get you pregnant. There are support groups for sympathy, empathy and emotional support. I want my doctor to get results for me. Period. If he is a grump about it, that’s fine. I won’t see him much past the first few pregnancy tests anyway.

I wrote on this topic a long time ago in two previous posts Finding a good fertility doctor..part one and part two but it is probably time to revisit this topic.

Question: How do you evaluate an IVF clinic to determine if it is a good one?

Answer A. Accreditation? Nope. Accreditation is like getting your driver’s license. It is a minimal requirement to drive but doesn’t prove you are a good driver. Except unlike a driver’s license, labs aren’t even required to be accredited to operate. If a lab isn’t accredited (or hasn’t applied for accreditation) , that means they can’t even be bothered to do the minimum. That is not a good sign. Almost every lab achieves accreditation.  Accreditation, however, does not guarantee quality. One lab passed accreditation with flying colors, and then bragged about it in their advertising. So what?  The punchline is that they didn’t even have a written lab manual-the most minimal requirement for ensuring consistent high quality outcomes. They substituted another IVF lab’s manual for show and tell for the inspector and their deceit worked. Apparently, the inspector had some questions and concerns because what they were doing didn’t seem to match up exactly with the manual they presented but in the end gave them the benefit of the doubt and accreditation. In another unrelated case, a well-respected ART professional who performs inspections told me that they had been asked by the inspection agency to back off on their on-site inspections and stop being so picky. Is either of these incidents evidence of a widespread problem? I have no idea but I think that in a voluntary accreditation system where labs pay inspection agencies for the privilege of applying for accreditation,  this relationship can become more of  a customer relationship–where the customer is always right– rather than an oversight relationship. So I have become rather cynical about the value of accreditation as a sign of high quality. It is a minimal bar, that’s all.

Answer B. The best labs are the biggest most high-volume labs whose advertisements are heard on radio and TV. Nope, big labs have the biggest advertising budget and that’s all. Size is only significant at the extremes. Really low volume labs can have statistically unreliably good or poor rates because even a few negatives or positives can magnify the rate so it looks better or worse than what would be seen over the longer term. Also small labs may be just at the beginning of their business life with less-experienced staff or even insufficient staff. Extremely large programs with very high volumes (thousands of cycles a year) have greater challenges with maintaining quality over such a large system– often employing a dozen or more embryologists–each of which need to be consistently well-trained and high achieving.  CCRM in Colorado is arguably one of the best labs in the country with consistently high rates, reporting a 67% live birth rate per transfer in 2011 for its youngest age group.  It is a medium sized clinic, reporting 394 cycles in 2011.

Answer C. The best way to evaluate a lab is to first, compare live birth rates for your age group to the national average and secondly,  interview the clinic to get more up-to-date clinic data for recent pregnancy outcomes (not yet reported to CDC) and their experience with new services. C is the correct answer.

Question: How do I investigate the live birth outcomes for clinics in my area?

Answer: The CDC maintains a website for the public to evaluate outcomes. All reporting programs can be found here. You can also find a list of non-reporters who failed to comply with the law here. More information about the history of ART surveillance in the US and  the law that required reporting of outcomes in the US (called the  Fertility Clinic Success Rate and Certification Act ) can also be found on the CDC site.

You can also read about some factors to keep in mind when comparing rates here.  I actually disagree with the CDC regarding one point on this page. They suggest that rates aren’t an absolute indicator because some programs take in more “hard” patients than other clinics. Every clinic I have every heard about or worked with feels that they get more than their share of “hard” patients from time to time. I think this is a weak excuse for poor outcomes. Even if patients are “harder”,  their outcomes can be good with an appropriate treatment plan.

Part of what a good physician does is carefully analyzes a particular patient’s situation and recommends the “most-likely-to succeed” treatment plan based on their experience. Sometimes the right answer  for the patient is that IVF is unlikely to work for you and the first, or the second or the third cycle doesn’t get ordered. This may be hard for patients to accept but it is kinder to them then processing them through cycle after failed IVF cycle. Hard patients may be the ones that will benefit from donor egg, donor sperm or surrogacy. We didn’t advertise at all for patients in our Indiana clinic so we got a mixture of patients, harder and easier. Sometimes, we got patients who’d failed everywhere else and heard of us last. We had exceptional rates because the lab was good and- just as important- the doctors were good at ordering the most likely to succeed plan for the patient. Sometimes it was IUI. Sometimes IVF. Sometimes donor gametes were suggested. Every patient’s road map was individualized.

The only time a clinic’s rates get really low–and yet is not reflective of low lab quality — is when you have too many patients put into IVF cycles that are unlikely to benefit from them. This is a diagnosis failure if it occurs often enough to affect the rates. So why do it? Well, cynically, most clinics get paid just as much for failed cycles as successful cycles. But this “push to IVF” may recruit more patients on the front end, it invariably will bite the clinic in the back end when the clinic’s stats start to decline because they are using the wrong procedure for these patients.

Companies like Univfy are working to devise better predictive tools based on individual patient statistics for guiding patients and their doctors to the most effective treatments so hopefully, with time and better patient counseling,  this weak argument of  poor stats due to too many “hard” patients doing IVF will finally be kicked to the curb where it belongs.

I also like this site called  Fertility Success Rates for comparing clinics. It is simple to use and shows you side-by-side comparisons using the same data reported to the CDC. Top clinics are reported here in a list. The top clinics list is simply based on highest rates. Keep in mind that a clinic with 30 cycles and a 70% pregnancy rate may not be as good as a clinic with 300 cycles and a 50% pregnancy rate because the low volume clinic’s high rates may be a statistical anomaly and not reflect longer term outcomes. You can read some of the caveats about interpreting success rate reporting here.

To investigate fertility clinic outcomes, you can also go to the SART site, it’s easy to use and includes almost all IVF clinics.  SART also acts as a vendor for members who report their data to CDC. Most programs in the US are SART members so you can find almost all program results through the SART website. The SART site may be easier for patients to use than the CDC site, although the CDC has made great improvements in their site since its inception.

SART members are required as a condition of membership not to compare their rates to other clinic’s rates or the national average. That is most likely part of the facade of  “we are just one big happy family of IVF providers”, all of which pay SART handsomely for the privilege of membership. Read about this somewhat controversial SART membership requirement  –which some consider censorship– here.

You will find a map of the US on the SART site. Click on your state and a list of SART member clinics in your state will pop up. Click on each one that interests you. You will find a short summary of demographic info on each clinic. At the bottom of this clinic -specific pop-up window, you will find a link to that clinic’s specific stats for the most current year. 2011 stats are the most current at this time. You can print off the one-page report and compare clinics side-by-side. Pay special attention to your age group. The youngest age group typically sports the highest rates. If you are older than that, look to your age group for your chances, which will likely be lower.

What is a good success rate? Well, it is easy enough to find the National Summary Report on any of these reporting sites. The National Summary Report is a one page report summarizing the success rate for all US clinics for a particular year. The 2011 report can be seen from this link:  2011 SART Clinic Summary Report for US Clinics. Below, I have copied some of the report. This is for fresh IVF cycles using the patients own oocytes. There is also a section on the report for thawed embryo cycles and fresh egg donor cycles if you are having these procedures instead.

You’ll note that the AVERAGE live birth rate for US women who used IVF and were less than 35 years of age was 42.9% per retrieved IVF cycle  and 46.3% in cycles that had embryos transferred. I wouldn’t go to a worse than average clinic.  Would you?  If your clinic reports poorer results, ask for their own more recent in-house results. Maybe they have improved. Make sure that you are comparing apples with apples. Ask for the outcomes for women your age using the procedure you are considering. If the clinic doesn’t answer your questions or is vague about results for different age groups, maybe it is time to interview another clinic.

Fresh Embryos From Non-Donor Oocytes

  <35 35-37 38-40 41-42 >42
Number of cycles 39721 19930 20130 10277 6033
Percentage of cycles resulting in pregnancies 46.2 38.5 29.3 19.5 9.1
Percentage of cycles resulting in live births 40.1 31.9 21.6 12.2 4.2
Reliability Range (39.7 – 40.6) (31.2 – 32.5) (21.0 – 22.2) (11.5 – 12.8) (3.7 – 4.7)
Percentage of retrievals resulting in live births 42.9 35.2 24.8 14.5 5.3
Percentage of transfers resulting in live births 46.3 38.4 27.5 16.6 6.5

Use this data from mandated reporting as a tool for advocating for your best possible health care. It’s more info than other types of patients get about their providers before they undergo medical treatment. It’s a shame not to use it.

 

© 2013, Carole. All rights reserved.

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