To read the Phase I Recommendations in its entirety in PDF form, please click here . You may leave your feedback and comments about the entire paper on this post.
To read the Phase I Recommendations in its entirety in PDF form, please click here . You may leave your feedback and comments about the entire paper on this post.
February 19, 2010 at 7:06 am |
To whom it may concern,
I actually have not read the paper but just wanted to leave my feedback on adult congential problems. I was born with Tetrology of Fallot and had open heart surgery in 1968. I just had a pulmonary valve put in as I did not have one. They caught it pretty much just in the nick of time. I was not going to an adult congential doctor but just a regular cardiologist. He missed it completly and thought everything was ok. I broke my ankle when raising my house due to Katrina and had surgery. I then had a TIA which went thru the hole in my heart to my brain. My cardiologist then recommended me to another doctor who caught it. I am now going to a cardiologist who mostly see’s kids but also some adults with congential issues which I think will be better for me. There are no true adult congential providers in Louisiana. My main comment is that I think there needs to be an effort to get more docs to every area of the country. I had my open heart surgery at the Mayo clinic. My surgery went excellent and they were great but now I am broke. Your website has been most helpful in deciding where I was going to have my surgery since it showed who does the most surgeries. Thank you for that.
Kathleen
February 23, 2010 at 1:43 am |
To All,
I am just wondering if this includes all people who have CHD’s or if it is only the people with CHD who have health insurance. I was born in October of 1956 and had my first (of three) surgeries three weeks later. All my surgeries have been done in a pediatric setting, even though my last one was at age 45. I am losing my health insurance April 1st of this year and I wonder what I am going to do? I just did not see where this was addresses.
March 23, 2010 at 10:45 pm |
The goals are laudable but I wonder how many institutions will be willing to go through such rigorous accreditation given the size of the CHD population. As only a subset of this population requires specialized care are there any statistics about how many of the 1.4 million CHD survivors require ongoing cardiology care? I know many children born with a PDA or VSD, the most common defects, who do not require follow-up care. It seems to me that this is intended to address the needs of complex congenital heart defects, or CCHD, as opposed to CHD so it would be helpful to know the size of this population. In light of the changes in healthcare I expect access to specialized care will be restricted to contain costs so it will be important to focus on how preventative care will reduce overall cost of care.
What I am most concerned about and have found lacking is prevention. Our son was born with TGA and multiple VSD’s so he is a CCHD survivor. The quality of care he has received at our Children’s Hospital is excellent in terms of tracking his medical outcome and closely monitoring physical changes, but there has been no focus on prevention in terms of diet, exercise, tracking his cholesterol, fibrinogen, C-reative protein levels, etc.. He now has an adult cardiologist and will continue to be followed by his pediatric cardiologist as the only ACH specialist in San Diego is nearing retirement and our son wanted continuity of care. I have long been impressed with Scripps Integrative Medicine’s Director Dr. Mimi Guarneri, a highly regarded adult cardiologist who recently won a “Scientist of the Year” award and wrote the book “The Heart Speaks”. He recently had his second visit and we all think they have a model program for how medicine should be practiced for anyone at risk for heart disease. In addition to finally having an extensive blood panel done to assess his risk factors, Dr. Guarneri requires all new patients see a nutritionist before she meets them. Our son had to complete a detailed diary about his diet and exercise habits, both of which were lacking, and the woman he met with was positive and supportive about changes he could make to improve his health. They believe that diet, exercise, and stress management are the best defense against heart disease. As CHD children have the same or increased risk factors that all of us face with age I think prevention for this population is vitally important and should begin early. Since that initial visit 8 months ago our son has lost more than 20 pounds and is maintaining his goal weight of 155 pounds. He is exercising moderately and using the breathing techniques the cardiologist taught him when he feels anxious. At the end of his first visit both the dietician Dr. Guarneri gave him their card with their email and personal cell phone numbers in case he had an emergency. Wow, how many doctors do that today!!! The dietician told him he can text or call her anytime when he transfers to UCLA or Cal Northridge in the fall to help him stay on track with making the right food choices. So, from my perspective a quality CCHD model clinic would look very much like Scripps Integrative Medicine. Educating CHD patients about that which is within their control, (what they eat and how they exercise) should be a major part of the program. Prevention for this population needs to be more extensive than prophylactic antibiotics before dental cleanings. Lastly, our insurance company refused to pay for the visit with the dietician and squawked about some of the blood work that was ordered. I paid out of pocket for the dietician visit and felt it was money well spent. He needed to hear from someone besides Mom that eating right is key to his health and the message finally got through. He feels better, looks better, and with the extra 20 pounds off exercise is much easier and more pleasant. How ironic that the insurance company refused to cover such an important service that can reduce future risk.
April 10, 2010 at 10:22 pm |
I wonder if ACHA agrees with the comment by the previous writer, that only a subset of adults with CHD need follow-up. Anyway, I was impressed by the Vision 20/20 document; it’s clear that a lot of thought has gone into it. My main question about the endeavor revolves around ACHA’s role as the sole (?) arbiter of accreditation of ACHD medical centers. Do those agencies that accredit hospitals, nursing homes, etc., usually have a link to government, either local or federal? Not sure.
Who would the perform the visits (and other proceedures) to assess a facility? Would this be done only by medical professionals, employees of ACHA, volunteers or board members of ACHA, etc.? I would hope that an accreditation team would include at least one “patient” and/or community representative.
Anyway, I did not see anything in the document about how failure to meet accreditation standards might affect a facility. There seems to be no mention of “enforcement.” Perhaps the idea would be that a patient would prefer to go to a facility with ACHA accreditation, and/or a prospective patient would find an accredited hospital listed on ACHA’s website and thus would be more likely to go to one just by virtue of not hearing about an unaccredited facility (am I being clear here?–assuming that ACHA would not mention the failing institution on its website). But that wouldn’t apply to patients living in areas in which they had really only one choice anyway.
I definitely agree with the idea of encouraging development of new ACHD treatment centers, and standardizing the referral process for patients who move from one part of the country to another (or even to another country).
I don’t recall that the Vision 20/20 document included information about research–I guess that’s a different issue.
I didn’t expect to go on this long. Thank you for all your work, and for giving us (ACHA members/constituents) the opportunity to review the document. Perhaps I’ll attend the forum on April 23. Thanks again.