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Category that Best Describes You:
| I survived HUS | 3 |
| My child or relative or friend survived HUS | 34 |
| My child or relative had HUS and did not survive | 2 |
| I treat children who have HUS or survived HUS | 2 |
| I wanted CME credit and was interested in the subject | 1 |
| I am a member of a public health department | 2 |
| I am a member of the press | 1 |
| I work with a company that caused an outbreak | 0 |
| My work/volunteer work concerns people who have had HUS | 4 |
| I was interested in the subject for medical or research | 1 |
| Other | 3 |
| Not responding | 2 |
| SUBTOTAL | 55 |
Other was defined as: Speaker, married to survivor, food safety educator
Clarification: I wanted to hear what questions parents have re: HUS
Before the conference, what categories of potential sequelae were
of greatest concern to you?
| Kidney | 44 |
| Digestive Tract | 32 |
| Reproductive | 17 |
| Heart/blood | 15 |
| Learning deficits | 15 |
| Emotional deficits | 11 |
| Nutritional | 11 |
| Motor coordination | 6 |
| Hormones | 5 |
| Sensory deprivation | 0 (category not understood) |
| None in particular | 2 |
| Other | 10 |
Other was defined by respondents to be:
Pancreatic problems- diabetes (3 total)
Migraine headaches (2 total)
Fatigue
Effects of new technology
Urinary problems
ACE Inhibitors and what they do
Compromised immune system
Strokes, bleeding in the brain
All
Lethargy, Irritable bowel syndrome, eating disorders
Brain aneurysm
Was the glossary you received before the conference helpful?
| Yes | 47 |
| No | 1 |
| No Answer/Not Applicable | 7 |
Did you learn something new about how HUS unfolds during the acute
phase of the illness?
| Yes | 49 |
| No | 4 |
| No Answer/Not Applicable | 2 |
Did you learn about the tradeoffs of the use of plasma transpheresis?
| Yes | 45 |
| No | 7 |
| No Answer/Not Applicable | 3 |
In general, do you now feel you understand how the acute phase
of HUS unfolds better than you did before the conference?
| Yes | 49 |
| No | 3 |
| No Answer/Not Applicable | 3 |
One "yes" respondent said: Better about long term, current
remedies and hopeful for future improvements.)
Will you discuss information you gained at this conference with
your child's doctor?
| Yes | 34 |
| No | 1 |
| No Answer/Not Applicable | 20 |
Did you learn anything that will help you get better treatment
for your child/patient?
| Yes | 31 |
| No | 2 |
| No Answer/Not Applicable | 22 |
If so, what?
Treatment regarding high blood pressure
Exercise and weight are important to manage to help prevent diabetes.
ACE Inhibitors may help proteinuria patients.
No, it just confirmed in me that I'm doing the right thing for my son.
Blood counts, symptoms, potential complications in future
Follow up care/tests.
GFR Info will be very helpful
Follow on cardiology
New tests; experiences of others
Other available gastroenterology tests
How to deal better with this stomach problems.
That Dalton should be having his blood pressure checked; It really
helped for me to be able to speak with Dr. Tarr personally after 3 years.
Increasing ACE inhibitors to decrease proteinuria; long term effects
of anuria -->end stage renal disease.
I better understand the renal sequelae that has developed after so
many years.
Even though my child seems ok in some areas, he still should b followed
in others.
I understand the importance of followup care because of hyperfiltration.
ACE Inhibitors to help reduce progress to kidney failure
Reassurance that current treatment is beneficial and based on most
recent data.
Looking at ACE, proteinuria which hasn't been addressed, scar tissue
and different testings, direction
Prescription of ACE inhibitors
ACE Inhibitors
ACE Inhibitor use
More attention to ACE inhibitors, use and follow up for all patients
must be encouraged.
It appeared that the long term kidney outcome is very good.
Testing watching for diabetes
On a scale of 1 to 10, compared to what you were told about sequelae
when your child was discharged from the hospital or what you knew before
the conference, would you say that at this conference you learned:
| Almost nothing new | 1 | 0 |
| | 2 | 0 |
| | 3 | 0 |
| | 4 | 3 |
| | 5 | 4 |
| | 6 | 4 |
| | 7 | 10 |
| | 8 | 9 |
| | 9 | 3 |
| A tremendous amount | 10 | 8 |
| | N/A or N/R | 13 |
| | TOTAL | 54* |
* One person answered 7 to 8.
On a scale of 1 to 10, how enthusiastically would you recommend
that a parent or physician dealing with a child with HUS review the proceedings
for this conference, which will be available on the internet?
| Don't bother | 1 | 0 |
| | 2 | 0 |
| | 3 | 0 |
| | 4 | 0 |
| | 5 | 1 |
| | 6 | 0 |
| | 7 | 3 |
| | 8 | 6 |
| | 9 | 10 |
| An absolute must | 10 | 28 |
| | N/A or N/R | 5 |
| | TOTAL | 53** |
** One person answered both 3 for a parent and 9 for a doctor. Another
answered 9 to 10.
Comment on this question: But do not publish attendee names for Q&A.
What questions do you still have?
Continue information of etiology and transmission; long-term complications
of blood transfusions.
Plenty that are unanswerable at this time due to limited data.
Several, because this is still so new, that they don't have answers.
Thank you
None. Right now. But probably when I get home. I will have questions
then.
Severe neurological effects of HUS.
I would like more information on nutritional concerns for children
with continuing renal damage.
Concerns still about learning disabilities
Eye sight affected?
Any available studies on life after HUS that are open to participants
in our area.
Continuing education such as you gave us today is TREMENDOUS! I would
like to know if contact with other seminar attendees is possible?
Is lack of stamina common? Can it be improved?
Mechanism of toxin formation in the gut.
Does HUS/TTP perpetuate problems with menstruation?
How can we keep up with current research?
More on nutrition? More long-term studies? Usually each 50 minute segment
of a talk is equivalent to 1 CEU. This talk might have qualified for more
than 7.
What effects will HUS have on reproductive health?
What is the correlation with HUS and Irritable Bowel Syndrome?
I spoke with a gentleman January of this year and he mentioned that
he had a study that showed how the finishing out of beef before slaughter
has a great effect on if that animal pass the E. coli bacteria. Have you
heard of this?
Sequelae about other pt with brain aneurysms; or information about
post-mortem brain aneurysms
What else would have improved your experience? Do you have any
other advice for us?
Think about incorporating public health aspects to future conferences
as many times these cases are associated with outbreaks.
None/Good job. A short talk and history on S.T.O.P.
As an adolescent, I had a hard time understanding all the scientific
terms, as well as trouble with being able to sit still and focus.
Some speakers quite medical/technical to understand; excellent idea
to have binder of speaker's notes; room was cool.
Subdivide the professionals and the families. The info was over our
head often, though shared with a good heart.
Have the professionals use some layman's terms for us to better absorb
the information; THANK YOU for the copies of the presenters' slides.
I thought it was very well done, very well put together. It covered
all the different aspects of effects of HUS.
Thank you for hosting this conference.
Something to consider adding to your "to-do" list mandating
all states use the technology (currently available) that gives a patient
test results within 24 hours of submission indicating whether or not they
have E. coli-HUS.
My daughter suffered at home for 7 days before she was diagnosed.
This was a wonderful experience
You have done a superb job!!
I am very grateful for this experience. 1. More follow-up from Children's
Hospital would have been helpful. 2. I thoroughly enjoyed my "conference"
day. Thank you for the invitation and all the wonderful information.
When's the next conference?
Follow up newsgroup. Server for HUS "community" to freely
exchange information.
Excellent presentation!
Take a well deserved break. You did a superb job!!
What determines whether dialysis or plasma pheresis should be used?
What exactly is plasma pheresis?
Very well put on and informative conference.
Maybe having one doctor who could answer general questions rather than
so many specialists who won't/can't answer overall questions.
More medical profession involvement from the attendees. MY (our) pediatrician
had zero knowledge.
Excellent material - would love to see a repeat with more advance notice
to medical professionals;
Each speaker complemented the previous; consider offering the sessions
for CEU credit via internet study. Maybe American Nephrology Nurses would
put on their site and/or link to yours.
Great for medical staff and parents to share and all hear the same
info. Esp. good to hear level of parents questions. Thanks!
Great job!!!
The guest speakers were fantastic. Perhaps, this very informative meeting
could be extended to a 2-day agenda.
Congratulations on a great conference.
More time for questions.
Too wide a discipline. Maybe have two conferences geared toward each
group. Excellent information, though. Doctor from Italy was great, but
hard to understand. Dr. Tarr was great! Very little on neuropsychological
problems upon discharge from hospital.
Coverage of pneumococcal pneumonia HUS.
Ensure printed/internet viewing available.
Perhaps we could reconvene in five years/ten years to review new data.
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