use of health services study

[tgasser]

The National Human Genome Research Institute (NHGRI) Social and Behavioral Research Branch is conducting a study to learn more about the experiences of individuals with androgen insensitivity syndrome and related conditions. These are not uncommon genetic conditions, yet little is known about individuals with these conditions with respect to their health care experiences, how they first learned about their condition and current use of and trust in health services.

Better understanding of the experiences of a diverse sample of individuals with AIS or other similar conditions could help genetic counselors and other health professionals do a better job at meeting their patients’ needs.

If you are interested in participating in this study, please contact Tricia Gasser, who is leading the study, at the National Institutes of Health 1-800-952-7951 mailbox 7732180043 or email tgasser@<hidden>, with your mailing address and she will send you a study packet. The study packet includes a cover letter, survey, and a self-addressed, stamped envelope for you to return the survey at no cost to you. This is an anonymous study, meaning your participation and responses will remain completely confidential.

The survey takes about 20 minutes and includes questions about how you first learned about your condition, your attitudes about that experience, feelings surrounding health care providers, and your use of health services in the past 12 months. You are eligible to participate if you are age 18 or older and have AIS or a related condition (e.g. Swyer Syndrome, Vaginal Atresia, 5-alpha Reductase Deficiency, Mayer-Rokitansky-Kuster-Hauser (MRKH) Syndrome).

If you have any questions or concerns regarding the study or are not sure if you are eligible, please contact Tricia Gasser at the above address. Thank you for your time and consideration. This study was approved by the National Human Genome Research Institute (NHGRI) IRB. The cut-off date for this study is August 31, 2004.

[Sunshine1]

How cold, you will be judged, tagged, and numbered.


Genetic counselors ? a) help me OR
b)help parents that don't want to have
a child born like me.

I pick B.

[tgasser]

The goal of the above study is certainly not to become detached from the real stories and voices of individuals, but to learn from them. Better understanding of the health care and disclosure experiences of a number of persons can allow health care providers and genetic counselors to learn from these experiences and improve the quality of care they provide. Therefore, any responses (even if anonymous) are valuable sources of information that are appreciated both for their individuality and their shared experience.

As a current genetic counseling graduate student, I can speak a bit about the role of genetic counselors as it has been modeled to me. Genetic counselors are dedicated first and foremost to needs of the client (I pick choice A!). The interest in this area of research is not at all related to reproductive decision-making, nor is it the practice of genetic counselors to coerce parents in any way. It is instead being carried out with the ultimate hope of improving the way individuals are informed about their condition and the care they receive, as well as facilitating better adaptation and coping. I can refer you to the National Society of Genetic Counselors (NSGC) website for more information about genetic counselors and what we do: www.nsgc.org

I appreciate the feedback and hope anyone who has questions or concerns about the study or our intentions as social science researchers will contact me through email or phone to continue this conversation.

Best,
Tricia

[Dana Gold]

quote:

"Better understanding of the experiences of a diverse sample of individuals with AIS or other similar conditions could help genetic counselors and other health professionals do a better job at meeting their patients’ needs".

If that is the goal; then it is infinitely better than what has been in the past and is currently standing in the way of intersexed individuals: TVC and other paranoiac, shallow-minded and deluded medical/psychological/socio-political individuals or groups who regard such conditions as abominations of God or gross "abnormalities".

People with an intersexed condition need all the help they can get as it has been severely lacking for too long (except, of course, "normalizing" procedures). Unfortunately, that is the reason why many intersexed individuals distrust, fear, and dislike the above noted social entities and which may present an initial "obstacle" to the serious and honest individuals or groups offering help.

[Sunshine1]

I have no problem with people like or her studies, I'm just more real about why people go and see someone like her. I know parents that have kids with CAH that go to genetic counselors and decide not to have any more children based on what was discussed with the counselor. She was quick to stress in her post "nor it is the practice of genetic counselors to coerce parents in any way " and wasn't trying to imply that but the reality is that the very information that she presents does help them in that decision.

"Genetic counselors work as members of a health care team, providing information and support to families who have members with birth defects or genetic disorders and to families who may be at risk for a variety of inherited conditions. They identify families at risk, investigate the problem present in the family, interpret information about the disorder, analyze inheritance patterns and risks of recurrence and review available options with the family." (NSGC)

I have no doubt that she wants to help and I rather find her career field interesting. My first reaction is "Why, does she want to help and what is the bigger picture ? " I know that there are programs that are dealing with CAH in regard to gene therapy that will in 10- 20 years make people that have CAH into carriers instead of people that present with medical symtoms. Also, there is a doctor that is working on a cure for CAH in her and my life time. I'm for this because there will be a cure for CAH long before there is any acceptance of anyone born different. CAH for me is a medical condition - born with an adrenal gland lacking the ability to make cortisol- need replacement cortisone med to suppress androgens and so I don't die in an adrenal crisis much like a diabetic needs insulin to live. Surgery was a necessary good thing because I needed menstraution to be able to exit my body and psychologically wise as a five year old I knew that my external genitals although didn't bother me but yet weren't quite right. This was something that I just knew and was calm about, it wasn't the best surgery at that time but it was good enough to match with my female gendered brain, female only chromosomes, two ovaries and uterus . I have nothing male - no male chromosomes or testes. So having ambiguous external genitals that looked more male than female wasn't to my benefit.

You all write in your posts about all the intersex conditions not being medically related but in reality we are viewed as again being things that need fixing or as something to avoid having in the first place. That's the impression I got from her post and others most likely will not take it that way.

[Dana Gold]

quote;

"but in reality we are viewed as again being things that need fixing or as something to avoid having in the first place."

Yes, you are right. My previous post was written in the hope that the people involved in the "survey" use the information to learn about intersexed conditions and disseminate amongst their colleleagues who may, in fact, use the data to fix or prevent conditions such as CAH, rather than understanding the medical consequences (salt-wasting, osteoporosis, breast cancer) of some intersexed conditions and providing adequate medical care instead of "normalizing" sexual ambiguity....admittedly which some people and/or their parents will still want

I guess I overlooked the genetic counselor part , overlooking the possible eugenics aspect, and was thinking "outside the box"...oh well:rolleyes:

Dana

[miriam]

Sunshine 1 wrote: She was quick to stress in her post "nor it is the practice of genetic counselors to coerce parents in any way " and wasn't trying to imply that but the reality is that the very information that she presents does help them it that decision.
What’s the difference between to tell or not to tell? Answer: secrecy. When you say that parents should not be informed because you don’t like their decision, you are as wrong as the doctor was who decided not to tell my parents (and me!!!) about AIS. It’s not up to you to think for other people; everyone has the right to make their own mistakes.

But if you DO tell other people (both parents and medics) about our feelings and our experiences, you make sure that they can’t say “Sorry, I didn’t know that.”

I find it difficult to advise parents about this. First of al, there is a difference between the abortion of an unborn intersex child (that is unacceptable to me) and the decision not to get pregnant after you’ve heard you are a carrier of a genetic disorder. Let me tell you this: AIS sucks, so I will never advise parents to give birth to a child with AIS if that is not necessary. But, on the other hand, I’m (rather) happy with my life. I know that it is an extremely difficult decision for parents and that’s why the help of a genetic counselor is important.

My concern with this kind of research is that nobody knows the origin of the stories.

Tricia Gasser wrote: You are eligible to participate if you are age 18 or older and have AIS or a related condition (e.g. Swyer Syndrome, Vaginal Atresia, 5-alpha Reductase Deficiency, Mayer-Rokitansky-Kuster-Hauser (MRKH) Syndrome).
Who will check that? Many people with one of those conditions where diagnosed with “testicular feminisation”. Later that was changed to AIS, but many people still don’t know exactly what their specific condition is. Besides that, I think that it is rather difficult to include MRKH in this research as those women have XX-chromosomes. If you include these women, you should include women with CAH as well. For this kind of research (the results are to be used by genetic counselors) it is important to know the correct diagnosis, not only to exclude transsexual people who think the diagnosis IS is a ‘better’ diagnosis than IS is, but also because people with different IS-conditions have different views on what should be the perfect treatment. Especially in the case of an incorrect diagnosis, chances are they are extremely unhappy with their treatment.

When you want to restrict your research to “AIS & related conditions” you probably want to define your target as “Women with androgen insensitivity syndrome (AIS), XY gonadal dysgenic (Sweyer Syndrome), mixed gonadal dysgenesis, Leydig cell hypoplasia, true hermaphroditism and androgen biosynthesis disorders like 5 alpha reductase 2 deficiency (5ARD) and 17b-hydroxysteroid dehydrogenase 3 deficiency (17BHSD).” To be political correct you can also mention 17a-hydroxylase, 17,20 lyase deficiency 3b-hydroxysteroid dehydrogenase 2 deficiency.

BTW, vaginal atresia or agenesis is not a condition in itself, it is a symptom.

Tricia, can you tell us a bit more about your research? How many people do you need to participate to get reliable results? How will you handle the differences between all those conditions? Please give us more information about the survey and the way you want to use our answers.

Groeten, Miriam

[tgasser]

Miriam, you raise some excellent questions, ones we have struggled with during the development of this study. The question of what conditions to include is challenging and I greatly appreciate your input. This will definitely be taken into consideration.

We are primarily interested in learning more about how individuals first learned of their condition and attitudes towards that event, as well as current use of and trust in health services. As such, we are choosing not to focus on the issue of treatment. This is certainly an important topic, but not one we chose to approach at this time. Due to the nature of this study, it is less important that an exact diagnosis is known since we are not proclaiming to be studying the effects of treatment on a particular condition or set of conditions. We are interested in perception: of health care, of the disclosure experience. Therefore, we will certainly look to see if there are any differences between the experiences of those with different conditions, but it will not undermine achievement of the primary aims of this study.

As for how many participants we would need to get reliable results, ideally, we are looking to recruit 80-100 persons. I know this may be ambitious, but the more people who participate, the more we can learn about the disclosure experience and experience with health care providers. Unfortunately, there is little research out there about these issues.

In addition, with regards to the question of how your answers would be “used” (don’t like to think of it that way!); we are hoping this study will add to the discussion on information disclosure. Views about how much and when to tell people details about conditions like AIS have varied over the years, but little research has been done drawing on the actual experience of those who have been through it. That is why we are hoping to recruit a large, diverse group of persons – to learn about your experiences with regards to this issue and learn from them.

Once again, thanks for the great feedback.

Best,
Tricia

[Sunshine1]

Some people with CAH don't even fit the medical definition of Intersex. That in itself throws this off anyway. Not everyone w/CAH is born with ambiguous genitals and that is something to consider in your study, right? Or maybe, CAH isn't something you want in your study because the medical aspect of CAH is life threatening so much in that it is screened for at birth in many states.

If someone thinks that they have an intersex condition and they are just darn sure they have one but the doctors of course are wrong then you want them in your study just as much someone that actually was born with an intersex condition and has really dealt with it ? Is this an acurate measurement? Today, I'm a purple jelly bean, tommorow I'll have CAH and the next day I'll have AIS OR XXY ...wait... I'm a space alien. Sorry, I work with the public and they are crazy.


Someone could read about an intersex condition and make up the rest for your survey just because they want to put in their two cents about doctors and be in a study that isn't going to confirm anything about them. This isn't a pure sample and is disrespectful to people that have an actual intersex condition.


I guess, I'm hoping that this will somehow be a real benefit instead of just a study that advances your and others careers. I helped a lot of people (medical residents, psych students) advance their careers as an interesting case and I never got anything from it except that I WAS USED for their own curiosity, I mean so they can learn. I know that you "don't like to think of it like that" and I'm sensitive to your issues but this is what it is. We are studing you and I'M SORRY but I want to know when the studying stops and the acceptance begins? If it ever will?


If people in the medical community could learn to get over their own personal biases when it comes to conditions like mine than that would be a positive step. How I was born was no big deal and nothing special. It's when you get a nurse that tells you "that nothing bothers her" but when you tell her how you were born she replies "ambiguous genitals look weird" and yet again I have to find it in myself to have patience and understanding that she wasn't being mean but she just feels that how she was born is the ideal. Either people get it or they don't and do we need yet another study for this ? Are these the only conditions that people are kept in the dark about? This is sad. I never waited for anyone to clue me in because I started reading my medical records when I was ten and waiting for all the medical residents to gather.

[tgasser]

I apologize if I gave off the impression that the study is open to anyone. For some of the reasons you stated, there are certain conditions that are not included in the study at this time, including CAH, Turner Syndrome, and Klinefelter Syndrome, among others.

Unfortunately, a limitation of this and all research of this type, and by that I mean anonymous studies involving surveys, is that we are not in a position to confirm diagnoses. That has both benefits and drawbacks. You have highlighted one of the main drawbacks. We cannot protect against potential persons who may not be entirely truthful. In an attempt to protect against this, we are recruiting participants from groups such as Bodies Like Ours and AIS support groups, where individuals are more likely to have an honest interest in participation. On the other hand, the benefit of using an anonymous survey is to allow individuals an opportunity to express their thoughts and feelings regarding potentially sensitive information in a manner that inherently protects confidentiality.

Best,
Tricia

[Sunshine1]

"individuals with Androgen Insensitivity Syndrome and related conditions" I did take that to mean any Intersex condition and I am glad you were more specific. I went to an ENT doctor for a growth around my tonsils. Upon reading my medical history he stated that I knew more about CAH than he did and it was true because he had CAH and AIS mixed up. Doctors are only human and when you aren't taking with them about their field, it's harder for them to recall information in detail. Now, if an Endocrinologist didn't know the difference between CAH and AIS then I would be scared (lol). When you used the term "related conditions" it was easy for me to think CAH also but someone else with CAH wouldn't think like that because not everyone with CAH is born with external genitals that fit the medical definition of Intersex. What cracks me up about people in medicine is that after I tell them about CAH. They think about for a second and the first or second thing that comes out of their mouths is "Well, you can't tell" and I wonder what do you think I'm supposed to look like?

You state that this study is anonymous but you want people to give you their mailing address ? Yeah, and they are supposed to trust you with that information? I worked in the social service field and although information was meant to be kept confidential that didn't always happen because of human error or human nature.

I've been at two different doctors office's in the past two years and was informed that I look like patient so and so. All I could think about was there goes that patients confidentiality and I chalked it up to human nature.

When I was a social worker in another lifetime, I had to be accountable for the information that I reported but I now understand that isn't what you are looking for. I realize that your survey is going to have an error margin that you will take into account. It's a survey that will help you with graduate school and that's nice. I helped out a lot of med students in my lifetime. It's freak rotation, YOU get to touch, pull apart, poke, and take pictures of the freak. Then I GOT TO see the psych students AND THEY got to study the results the med students had on my state of mind. Just a lot of fucking studying going on.

Recently, I read this article by some very smart people with a bunch of extra letters behind their names...M.D. or Phd....whatever but it was a really lovely article and it might of had a survey but I'm not sure and it went on to talk about how things should be in treating people with conditions like mine. It was a good article and I'm sure that it benefitted the people that wrote it because I UNDERSTAND THAT YOU PEOPLE need to be published. We make for good articles, people like me but on the other hand there was a critique of this same article by some very smart people with letters behind their names also. The critique was humorous because it was true and dealt with the real world because someone can write lovely articles and do surveys that say how things should be but forget to take into account the real world.

I didn't make myself clear on one point in a prior post but it's not about people not being honest and of course there are people out there that are not but the point that I was trying to make was that there are people out there that ARE SURE that they have an Intersex condition for whatever reason and of course their doctors and parents are conspiring against them but in reality they don't have any Intersex condition at all. It's not that they are dishonest but rather a little sick in the head.

I hope that I haven't bothered you with my posts.

aimee

[Betsy]

Aimee,

Tricia originally asked if I would forward the surveys to those who wish to participate. However, I am not the best person to be relied upon and have enough to do already so I declined. Having had several exchanges with her about this study, I feel she can be trusted just fine to destroy the addresses she is sent.

One thing i find immensely interesting is claims I hear so much that no one knows anything about IS issues or people yet when someone is trying to solve that problem, they get castigated for it. I hate to be blunt here, but you can't demand better and fairer treatment when you are yelling at researchers out the other side of your mouth. Treatment protocols will never get better by yelling at those who would want to see things change.

Imagine if you will---the scenario you painted so well in your first post: parents get genetic counseling and learn the child they are carrying has AIS. Their first unlearned conclusion might lead to abortion (and like Miriam, I am deeply troubled by parents who choose abortion in pursuit of the perfect designer baby). However, given the results of this study outcome, they learn that women with AIS are generally happy, well-adjusted women, they decide to carry the pregnancy to term. Why deny them another opportunity to learn everything they can about IS issues?

Studies are always voluntary, if you don't want to participate, then don't. No one is twisting any arms. I personally would participate but I have CAH and am not an invited participant. For all the bitching I do about lack of follow-up research, I also feel i have a responsibility to try and see that changed and if it means participating, I would (and have in the past).

On the thoughts regarding people lying or falsely believing they are intersex, it happens even under different controls. It happens here sometimes too. Usually they are easy to spot and I am sure survey answers from those who would lie to be included will reflect that general lack of understanding of some of the core issues we face.

Betsy

[Sunshine1]

I shouldn't of posted anyway. I REALLY AM SORRY if she takes anything that I wrote as yelling at her. I was just interested in finding out how her study was being structured. I've been studied for 33 years and they are still studying and it never did help but it has made me at times sick of their society and not want live in it anymore (I'm working on not being like that).

It has been my experience with the medical establishment that each doctor or nurse that treats you well and I'm talking about with Dignity, Respect, and Honesty not because they have been trained to but rather it's a core value of how they treat everyone.

I've had doctors not tell me a thing about CAH and I even had one lady doctor tell me don't read anything about CAH but I've also had other doctors that were more than willing to share everything on CAH. Those of course are the doctors that I trust, feel safe with, and go back to.

I have no trouble with her survey and I believe that Miriam also wrote that she wouldn't want to have a child with AIS although she has a happy life. I've talked with parents that have kids with CAH and you have also : ) but they are mortified that something like this genetic condition came from their genes.

Hearing about happy people always is good and it is comforting to know how people go on even with their affliction/disease (parents words) but given a choice I would gather that the general public would rather not have to deal with a kid that has the possibility of any condition.

A parent was nice enough to inform me that a baby born like me when externally they have no clue at first is gross and to be exact "Ewww gross ....chicks with dicks" was her response. Studying was done to find only female chromosomes, only internal female organs with no testes but the baby voids through a little penis. Plus, the baby lacks cortisol that is needed to not only suppress the adrogens that created the out of the norm external genitals but the need cortisone med to function as the cortisol that the body doesn't make so they don't die from an adrenal crisis. Being born a pseudo- hermaphrodite like me, SO WHAT but dying as an infant because you don't make enough cortisol that's a tragedy. There are so many conditions that can't be managed but CAH is one that can. It's sad that people get so bent out of shape about ambiguous genitals when I'm so glad that I was born with this condition instead of something else. I'm thankful to the guy in the 50's that created the cortisol and I'm thankful to my parents and the surgeon who tried to make things better for me and although the surgery wasn't perfect it was the best that was offered at the time. We aren't talking aren't talking about an enlarged clitoris but something that looks more at home on a little boy than a little girl. My own biological parents gave me up for adoption because of this and I was adopted by great people that understood why I was born like that and were comfortable enough plus the teaching school agreed that it was Ok to wait untill I was five to see what gender that I leaned toward because of the extreme virilization before any surgery was done. Nobody forced a gender on me and that was 33 years ago.

I do like that she is interested in any of our conditions but weary of yet another study and what is it really going to do for us? I tried to express that in another post that studying us is good but keep in mind about the biases that medical professionals do bring with them. Last year, I went back to school again and one of my classmates was an ER nurse picking up some extra credits which I hope that she was going to use for a new career because upon finding out that she was a nurse, I was all excited to tell her about CAH just in case someone with CAH came into the ER and then she would be familiar with it but I held back because her comment about being a nurse was "Yes, I deal with the scum of the earth." Gosh, I didn't even want to ventue into how she would think about intersex conditions.

People can read all the surveys they want and think that they are compassionate toward someone born like me but the real feeling come out when the are confronted with intersex conditions and any sensitivity training from reading surveys isn't that strong because their human nature/curiosity takes over. "Wow! you really have this" "You're the case of the day" "Why do you care so much about a condition nobody knows about? You're like me! NOBODY can TELL" "Nothing bothers me (in same breath) ambiguous genitals look weird" Acceptance of ambiguous genitals "is a dream world" "You're fixed now! It's OK" "Clitorectomy ? We can't do anything about that !" I state that regardless of their personal feelings that my medical care has never been anything but SUPERIOR but some treat me as a freak of nature, others you can see how uncomfortable they are with their fake smiles, most could care less one way or the other and they just want you to feel better and there is the small percentage that treats you with acceptance. They look you in the eye and their smiles are real and I FEEL THOSE are the true medical people. It seems that their reason for being in the medical field comes from their heart.

I was curious if this researcher's interest came from the heart but all I got from those post were in my opinion and that doesn't mean much (lol) were cold, flat responses and that was boring to me. It was like same old, same old and it will be just another study that I might scan through on the Internet if it is posted. I have a buddy that is a scientist and the way that he talks about the drug studies that he is running is beautiful. He really cares and has an interest, I was just concerned with her study because the first post was so vague. "Not much is known about AIS and related conditions..." hello? I've been studied my whole life but I realize now that she didn't mean CAH because she then after being questioned became specific in her following post.

Again, I hope what I wrote wasn't taken as yelling but rather concerns with how the study was being conducted. I was bringing up the points that I had because I was curious about being in the study. I particiapated in another study on this board and I never heard anything back from the person that was conducting the study. It felt like being used again and I didn't want that to happen if I decided to be in this study. It turned out that she doesn't even want to study CAH. Sorry that I asked real questions and shared my own experiences.

aimee