Endofound’s Sixth Annual Medical Conference: Ending Endometriosis Starts at the Beginning
ENPOWR Project Update
Hi everyone, I will try to be brief. I know everyone is cold and hungry and we are very close to lunch so I will try to go quickly. I wanted to give you an update on what Endofound is doing to help combat this disease on the front lines in sort of grassroots operation.
Endofound has a three-pronged mission; we try to help fund research and some of the research is being discussed over the course of these three days. We try to educate the general public and obviously the next generation of physicians and we try to do some advocacy work on behalf of patients. Our ENPOWR Project really focuses on that middle one that education bit and part of Dr. Seckin’s vision for starting the Foundation along with Padma was to try to get to the adolescent population, target them and make them more aware of this disease so that they could potentially seek treatment and stop disease progression before it gets to a point where they have some of these more radical treatments that they have to undergo.
In 2013 we got a bit of state funding and it really allowed us to start this program. New York State has been incredibly instrumental in allowing us to even exist. If any of you were here yesterday you got to see Senator Jeffrey Klein who was the one who has been extremely vocal, being our champion and securing that money for us. In 2013 I started with Endofound and along with their existing staff we launched the ENPOWR Project and it was part of the State’s Teen Health Awareness campaign, which looked at three issues facing adolescents, substance abuse, endometriosis and obesity.
Just a little bit about what the program is and how we developed it. It is based on evidence-based pedagogical practices so really just best practices for teaching. When a teacher walks into their classroom usually a good teacher takes a couple of weeks or so to get to know their students and know what kind of learner each kid is. Obviously as we know some students respond really well to oral presentations, some need sort of kinesthetic learning, some need visual presentations – so we try to in our presentation have all those things covered. There are a bunch of different teaching modalities. We do not have the luxury of getting to know those students, we only have about 45 minutes when we walk through the door so we try to hit everyone that we can across the room. We try to make the session as engaging and interactive as possibly we can. We call on people, we try not to put people on the spot for things that may be uncomfortable. We try to have it be an inviting conversation to open up the dialogue and then we differentiate it to meet the needs of the specific audience that we are seeing. As you know New York has a very, very wide range, specifically in the city, wide range of schools and so we try to make our presentation fit whoever we are going in to see.
The other thing that we have worked really hard to do is integrate it into the existing Health and Living Environment curriculum so there is set Sate centers that the teachers have to cover and so we have just tried to make our information work well within it. That will help us eventually to meet our big goal of getting it to become mandated information within that curriculum.
It is a highly replicable program which is just best public health practices so that we can take this to other places and we will talk about that at the end of it. And then we developed a monitoring and evaluation plan so that we could both internally evaluate how our staff is presenting as well as how it is being received within the people that are hearing the presentation.
This is just something to point out that probably not a lot of you know in this room in June 2013 this question was on the New York State Living Environment Regents exam which for those of you who did not go to New York State public schools, this is an exam that all students who are taking Living Environment, which is biology essentially, they have to pass this test. This question is actually worth a couple of points because it is a fill in the blank question which has a heavier weight and obviously has two parts to it. For the first time this was included in the test, which is really a pretty significant step in terms of making this a priority. Obviously I do not think there is any coincidence between this being the year we received our funding for this and this popped up.
A little bit about the presentation – when we go in we try to keep the conversation sort of superficial because obviously this is a very complex disease and we want to make sure that we achieve our goal of helping young people seek treatment if they need it and not confusing them more and not truthfully scaring them too much. We try to keep things kind of superficial. We provide basic biology and anatomy background and again, depending on the level of the students that we are going in that will determine how in-depth that has to be. We talk about the basic epidemiology and we usually take a poll and try to figure out how many students they think could potentially be dealing with this in their school. We talk about some personal experiences, sometimes we bring in volunteers who share their personal experiences there on the spot, which is a really impactful and engaging part. We talk about the symptoms and try to stay a little bit superficial because they can vary so much. The last thing is the call to action, what do we want you do to with this information?
When we go in we provide a pre and post-test. It is a little bit tricky particularly when we are in schools because there is not that much we are allowed to collect. There are some strict rules around that. We get a little bit of demographic data but we do collect information about prior knowledge, walking in the door what they knew about the disease and what they have learned at the end of the presentation.
Starting in the fall of 2013 we piloted the program and went around to as many schools as our metro cards would take us and community based organizations. We met with a whole range of stakeholders trying to get people to recognize the importance of this work and obviously created the curriculum and the…plan that I mentioned. In that pilot we met with about 500 students, adolescents throughout Manhattan, the Bronx and Long Island. Then we came back, took a look at the data that we had collected and made adjustments as necessary.
This is what has happened since then. Endofound has grown since then and we secured additional funding. The State has been very happy with our progress and has continued to fund us and just this week we found out that we have been funded again for the 2015-2016 school year, which is fantastic news. Since then we have added two full time staff positions, which has really enabled the program to grow tremendously. We have someone who can really focus on the outreach portion, which can be very challenging. You can imagine calling up to a school and they say, “Endo what, I’m sorry, what’s that?” and you are trying to convince them to let you in the front door to speak to their students about this. It can be a challenge at times.
We have interns throughout the state who are delivering the materials. They go through a training process with us, we do some observations and then they go out and do the presentations in their local areas. We have a tremendous group of volunteers, who as I mentioned already, come in and share their stories at times and also help get a foot in the door for us when we want to get into new organizations or new schools. We have done 266 presentations in 80 sites and over 6500 adolescents at this point. We are really growing tremendously. This graph is a little bit out of date just because there is a little bit of data entry delay but we are really hitting a lot of sites.
The demographic information, again it is really hard to collect because the schools are pretty stringent about what we are allowed to ask, but about two thirds of the students we have met are female and that is because sometimes we try to target all girl schools because there are just a lot of people in one place that we can hit at the same time. But we do obviously want to speak to the males in the room as well and really try to engage them and relate to them and try to understand what would it be like if you could not participate in sports or go out with your friends or do things to try to make them understand what this is like on a monthly basis, and remove all the stigma that is around it. The age range for the most part we are looking at 14 to 18 year olds, which is a pretty good audience for having the maturity level to handle this kind of information and also already, for the most part, experienced menses.
The quantitative data that we look at? These surveys have not been validated or anything but we are just looking at what they know walking in the door trying to get a handle on some of the prior knowledge and misconceptions that they may come in with. We talk about what body system this has to do with. Really, it is amazing – you would be shocked at how many people, young people who do not know that they need to see a gynecologist as opposed to be a pediatrician for this sort of thing. The body system is kind of a blatant thing but we talk about it in-depth.
The gender prevalence as Siobhan said you can look down the list, there is very, very little prior knowledge going into this. They basically know nothing and very few students in the room have even heard the word. Afterwards, we give the same post-test and we obviously have a much better result after we have provided them with the information.
From a qualitative perspective we also asked students how this is impacting them and these are just some quotes that we pulled: “That I have to pay attention to my body pain”. We obviously want people to just be more in tune with their own health and symptom tracking is one thing that we really push in these presentations. “I learned that endometriosis is very similar to my current periods, and that vomiting is not normal”. You can imagine we a lot of times speak to these students individually afterwards. They will come up and sort of share their stories and so many of them have experienced something where maybe their parent had this. They are under the impression that vomiting is normal because mom had that too. We are the first group to come in and say that is actually something that you should go seek treatment for. And then from a male, “The symptoms caught my attention because I know a person similar to the symptoms”. Again, we are trying to get the males to just maybe speak to the people they know, their loved ones – their wives, sisters, mothers, girlfriends, whoever they are and share the information.
What are the next steps for us? We would like to move outside of New York State. We are in talks with some folks in New Jersey about bringing the ENPOWR Project into their systems in a more systematic way which would be really wonderful. To do that we really need to diversify our funding streams. Obviously when we get seed funding we are tied to New York State so we need to venture out and be able to move into new areas. Fortunately, the presentation is very inexpensive to implement, which is wonderful. And part of that is looking at this idea of virtual presentations if we can remove the in-person aspect of it, then you could take out travel costs and that sort of thing. We have talked about looking, expanding our data collection. Obviously we would have to go through the IRB approval but looking to do a dysmenorrhea study to just get an idea of how many students are experiencing these actual symptoms. This is an idea still in its infancy though. The biggest one that I would really like to tackle this year is what happens after we leave? What is the follow up? Who is seeking treatment? And how is this information actually leading to change? What is happening after this? It is tough because a lot of times we have gotten our 45 minutes and that is it, that is all the school can allot us. Sometimes it is a definite hurdle and then of course there are aspects of privacy, boundaries that we cannot cross. It is a definite hurdle that we are facing. It is really our goal this year to prioritize that.
I will take any questions.
Peter Gregersen, MD: Presumably the students can follow up directly with you with contact information? And how often does that happen?
Theresa Davidson: It happens quite a bit. A lot of times it happens through the educators themselves. We will get follow up emails saying “I had three students come up to me since you have left and have told me that they are getting a gynecologist appointment” or something like that. We do not hear from the students themselves all that much. I think there is a little bit of a barrier there. Again, something we are trying to break down in terms of, as we just heard from the back, your 14 year old self reaching out to this person who came in, dropped this information and is now gone. We try to be as approachable as possible but probably one out of every three presentations we hear back from and get positive feedback. It is sort of anecdotal evidence. We are trying to improve our data collection on that front. As far as how many, like attrition rate – it is incredibly low – almost every school wants us back. So that is something else that has been really positive.
CY Liu, MD: I just want to make a comment. I think Theresa at Endofound is doing a very good job in educating the public, especially the young people. But I think we also need to pay attention to the physicians, especially primary care and regular general OBGYN. There was a consensus statement put out by the American Society of Reproductive Medicine back in 2003 or 2004. It is a consensus statement for the management of chronic pelvic pain and endometriosis by a group of so-called expert panel under – they are called the chronic pelvic pain endometriosis working group of ASRM. The statement was actually published in “Fertility and Sterility” back in, I believe it was 2003 or 2004. The statement said, “For the patient with chronic pelvic pain with a suspected endometriosis cause the laparoscopic confirmation is not justified”. Now they say not justified “unless there is an actual mass or cul-de-sac nodule we can feel that”. The recommendation from the ASRM was the second line medical treatment, like Danazol, progestin, GnRH agonist or those kinds should be used first. That statement later was endorsed by ACOG and also by Royal College of OBGYN in England. That was the official recommendation for the physician about chronic pain with a suspected cause of endometriosis. Now a patient who is 18 years old comes to you with a strong family history of endometriosis and that recommendation is second line medical treatment first, not the laparoscopic confirmation, which is terrible. That is the reason we are losing so many ovaries and causing so many problems. I just wanted to bring attention to that.
Moderator: I am actually going to follow up on Dr. Liu’s question, which is there is disagreement amongst us and we are discovering and debating about things in endometriosis all the time. What is the system for the ENPOWR program for updating and confirming and choosing what is going to be presented as “factual” educational information?
Theresa Davidson: Absolutely. I think that is a big challenge for us because you are exactly right there is so much debate about so many facets of this. Fortunately or unfortunately, depending on how you look at it, we really try to stay very superficial so we do not have to get into too many of the nitty gritty misconceptions or big debatable issues. We at Endofound recommend excision surgery as a best treatment and when we speak to young people about that we try to offer them potential solutions before that because obviously you are looking at a group – our main goal is to try to get them to seek the treatment if they need to, be an advocate for their own health and not just jump into something as aggressive as what you were just saying. We are constantly, to get back to your question, we are always looking back to the literature and reviewing with our medical advisors, Dr. Reich and Dr. Seckin about what, as an organization, what we believe to be what we are putting out there. So that then becomes indoctrinated as what the ENPOWR Project puts forth.
Audience Member: I have a question. As a teacher I know that we can really be there for our students and we are the ones who see them every single day. I am just wondering if there might be an opportunity to hold a district-wide education session with educators so that they can then dispense that information to their students and you are reaching more students that way. And then, some way to follow up with that as well and make sure that they are getting all the proper information and follow up in that way.
Theresa Davidson: Absolutely, I think that that is a really good point and we have done some work like that. We have attended conferences with science teachers and we have done presentations with individual health teachers within certain districts. The problem becomes exactly what you said, the follow up, it is a little bit hard and this program is so young and that is something we have talked about as being a next step. How do we educate the educators? You can then roll that out because they have a lot more opportunity to have access to more people – just sheer mass. We have to make sure that they are getting the right information as we have just discussed. There is so much misinformation out there and it is constantly changing. That has been our biggest hang up there. We are open to meeting with teachers anytime, we would never turn that opportunity away, ever.
Audience Member: I also wonder if maybe making that connection with the senator…
Theresa Davidson: Absolutely, absolutely. It is on our agenda. We are working for it.
Moderator: We are going to move on to one last question and I am going to reinforce that during our lunch time discussion led by Deborah Bush we will address a lot of these questions as well.
Ray Wertheim. MD: I would like to just make a couple of quick comments. Number one Matt Siedhoff has an excellent review article on this in the Green Journal in the last six months out of Carolina. In addition, I think we have lost the art of teaching taking a good history and doing a good physical exam, particularly a rectovaginal exam. I think we need to reinforce that when we are educating because the imaging studies do not show us endometriosis and we all know the amount of endometriosis does not necessarily correlate with the amount of pain that they are having.