Submitted by FertilityLab Thu 07/19/2012
This was originally written for my fellow embryologists and other ART professionals who have to bridge the technology gap between themselves and their patients. As a patient, what other advice do you have for us that could aid communication? (Originally published in the Journal of Clinical Embryology, 2012 Summer Edition). The Embryologist’s Role as Patient Communicator Working within any small work team, but especially in ART, may create a lab language that simultaneously makes communication within the lab group easy and lunches in public problematic. Anyone who has ever discussed work assignments with their teammates over lunch in a restaurant, (umm, so who is “stripping” after lunch?) only to realize their table is suddenly the object of curious glances has experienced the unintended consequences of lab jargon. Our lab language can also create confusion for our patients, if we don’t take time to translate for their understanding. It also helps to understand what most patients are interested in and what they could care less about. Feedback from patients who read my blog Fertility Lab Insider has given me some insight into areas of ART that patients find difficult to understand. Patients ask me questions privately via email or via a comment box on each post and often express their frustration that their clinic did not fully answer their lab-related questions. A review of the five most popular blog posts in the last two years reveals a few recurring topics that interest patients. 1. Embryo stages, progression and pregnancy outcomes 2. Egg Count Mathematics: Why the numbers change between retrieval and transfer. 3. Sperm Morphology: Kruger’s Strict vs. WHO criteria, what’s the difference? 4. Understanding the Gardner blastocyst grading scale 5. IVF Disasters: No Fertilization The most popular post was “Embryo stages, progression and pregnancy outcomes”, which attracted more views than the next four posts combined. This post contains lots of embryo pictures and discusses the (limited) predictive value of embryo appearance and its impact on a patient’s probability of pregnancy. Patients have a lot of questions about what an embryo “should” look like and what their chances of pregnancy are with the embryos they have. Since you probably don’t have a crystal ball, the best you can do is come prepared to tell them what the pregnancy rate is for patients in your program in their age group. You might even be able to adjust their expectations based on whether their embryo quality is as good as or worse than embryos that typically implant. If they are overly concerned about scoring based on morphology, you might point out that the embryos for transfer met progression milestones on time. Be honest, but try to interpret the report in a way that addresses what they care about, “can I expect to get pregnant?” Hopefully, you are only selecting embryos that you believe are still alive and have some chance of implanting and producing a viable pregnancy so that every transfer patient has a chance of pregnancy. Sometimes that’s the best you can say. Patients contact me through my blog when they don’t get enough meaningful time with the embryologist or they don’t understand what they have been told. The worst thing an embryologist can do is treat the embryology report like it’s the millionth one you’ve given and you are bored to tears- even if it is and you are. Ever been to one of those Quickie Lube shops and gotten the rundown of everything that was done to your vehicle while you are standing at the register? The guy rattles off the jargon-filled checklist so quickly that you barely understand half of what he is saying and then he asks for your payment. That payment part is always crystal clear. Don’t be that guy. The other thing that puzzles patients is, “Where did all my good eggs go?’ Patients frequently misunderstand the concept of attrition during the ART cycle. In the perfect world, 12 follicles would mean 12 eggs retrieved and 12 eggs fertilized and 12 appropriately staged embryos to transfer or freeze after culture is complete. We know that the perfect cycle is, if not impossible, extremely rare. We need to prepare patients for the concept that there will likely be a loss at each stage of treatment. Grading of either embryos or sperm is also very confusing for most patients. Giving patients a number or score is not enough. They want to know what does that mean for them in terms of their treatment plan or prognosis. Embryo grading is not easily understood by patients and is often inconsistent between practices. In some programs using a “1-4” scoring system, the very best embryos are scored as a “4”, in others as a “1”. Whatever system you use, make sure that patients understand what these results mean for them. Lack of uniformity in embryo scoring can also create problems for professionals. A recent exchange in Embryomail raised the issue of how program-specific scoring systems create confusion about embryo quality when frozen embryos are shipped between programs using different systems. It was proposed that translation documentation accompany the embryos or alternately, a uniform embryo scoring system should be adopted for all programs. Patients are often confused about the difference between Kruger’s Strict Morphology and WHO criteria cut-offs for normal semen values, especially if they had a normal result with one type of analysis and an abnormal result with another. In the WHO lab manual (5th ed.), the normal values for morphology are based on a modified Kruger’s assessment so the two methods appear to be merging. Regardless of the type of analysis used, patients really want to know what their best treatment options are for pregnancy based on that diagnostic result. If the physician (or other designated person) can discuss poor semen analysis results with the patient and then immediately follow up with some options for a treatment plan, it is very helpful. At minimum, if the lab tech is delivering the result to the patient, mentioning that treatment options do exist even for very poor semen analysis outcomes but leaving the more thorough follow-up discussion to the physician does a lot to alleviate patient anxiety and stress. The worst thing to do is leave a voice mail message on the patient’s home line on a Friday afternoon telling them they have no sperm, leaving them concerned over the implications of this result all weekend. It is important to reassure patients that even for patients with very low numbers of “normal” sperm, there are treatment options that can lead to parenthood using their own sperm. If that is not possible because the patient has no viable sperm, using donor sperm or other routes to parenthood can be mentioned as additional options. Doing the strictest possible semen analysis to narrow down whether the patient has poor sperm or exceptionally poor sperm makes little sense if the program is going to do ICSI anyway; it just upsets patients without benefit. It is hard for patients to understand that human sperm morphology is highly irregular and even large numbers of abnormal sperm does not mean they are doomed to childlessness. Finally, some patients believe that ICSI will guarantee fertilization and when that doesn’t happen, they are upset and sometimes angry. It is helpful to explain to patients, ideally in advance, that ICSI guarantees the entry of sperm into the egg, but subsequent molecular events also need to happen for the egg to achieve fertilization. It is also true that the egg may not survive the injection process, although this event should be rare. Arguably, patients who seek out IVF lab blogs are probably highly motivated to understand every last detail of their treatment and so do not represent all of our patients. Some patients want to know next to nothing about the details and are happy to forget they ever needed medical intervention to get pregnant. But for those who do want more information, we owe them a complete explanation in language they understand to address their primary concern, “What does this result mean for me?”
