If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Welcome -Please read prior to posting here

Collapse

About the Author

Collapse

Lisa Salberg Find out more about Lisa Salberg
This is a sticky topic.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Welcome -Please read prior to posting here

    Hello,
    This section of the message board is about screening the general population for HCM and other cardiac conditions. This section will not address screening children and youth population within families already diagnosed with HCM rather the general population as a whole. Often times when this topic comes up many people assume we are talking about athletes - this is not true - the fact is that in the USA more non-athletes will die from HCM annually then athletes. Each year in the USA - approximately 30 athletes will die from HCM and total of 124 young people under the age of 24 will die with HCM on their death certificates (source CDC database).

    This is an area that can create an emotional response as nobody wants to see a young person die from an undiagnosed cardiac condition or more to the point with HCM we want to ensure all those with HCM have timely access to quality health care.

    Recently I wrote a piece about the state of affairs in the USA with regards to screening in the young, which I will post below.

    If you are interested in the 'screening debate' I would caution you that this issue is far more complicated them some make it out to be and is in fact a science that our current framework has no great systems created for - thus we are in uncharted waters to some degree - at least in the USA - with he current health care system. I look forward to hearing your thoughts, answering questions and seeking systems that help us identify those in need of medical attention.

    Best wishes to all,
    Lisa Salberg

    ************************************************** ************

    What is being done in the USA to screen young athletes and children for sudden cardiac arrest?
    Cardiovascular screenings in children, young athletes and young adults – a review of the state of affairs in the United States of America 2009
    By Lisa Salberg, Founder HCMA

    This articles purpose is to discuss the state of affairs with regards to cardiovascular screenings in the young, particularly athletes in the United States of American in 2009. The Hypertrophic Cardiomyopathy Association, HCMA, has long been interested in this topic as hypertrophic cardiomyopathy, HCM, is the leading cause of death in young athletes accounting for nearly 40% of the cardiac deaths in athletics. Given this fact the HCMA has evaluated a number of the variables of the subject matter and have found many topics worthy of further investigation, public conversation and/or debate. There are several distinctive groups of people who have commented on cardiovascular screenings either through publication of scientific literature, advocacy groups statements, communities sponsoring screening events or individuals speaking out in public forums including the media.

    The medical community:
    The scientific community uses peer reviewed literature recommendations and guideline statements by recognized organizations such as the American Heart Association to provide best practices. The American Heart Association’s Statement on Pre-Participation Screening document, most recently updated in 2007, is largely viewed as the authoritative document on the subject. This document discusses the American Heart Association’s position with regard to pre participation of competitive athletics and is silent on the issue of general cardiovascular screenings in young people.

    The AHA has detailed 12 questions that should be included in all pre participation screening forms and offers suggestions that if any of the 12 questions indicate that a cardiovascular risk be present, additional attention from the medical community is warranted including electrocardiogram and echocardiogram. The document does not say that electrocardiograms “should not” be done as part of the pre participation screening process; it does explain that mandating this testing is not possible within the current health care system in the United States which at its core is very different then the Italian system and prevailing Italian law on the matter.

    The International Olympic Committee, IOC, and European Society of Cardiology, ESC, and many professional sports franchisees have adopted the inclusion of electrocardiograms, ECG, in the screening of athletes. There are some American physicians who questioned the AHA recommendations and have written about the use of electrocardiogram screening in young people in either the general public or among athletes. The observations that there are fewer HCM deaths in countries that utilize ECG screening in athletes in appreciated as fact, however the mechanism to screen the extensive, genetically and economically diverse US population have not been addressed to date. These articles have been largely silent on the logistical and access to care questions presented in the AHA article. Some of these articles are quick to point out the program used by Italy, without amply explaining the significant differences between the US health care system and the Italian program. The differences between these two programs will be explained later in this document. The role of the IOC or a professional team in evaluating elite level athletes can not be compared to evaluating high school, Jr. high School or recreational athletes.

    The definition of “athletes” needs to be identified and communicated. When looking at the problem of sudden death in the young are we only to look at elite level athletes, college level or varsity players in high school? Or are we to look at the little league ball player, the T-ball player or the children in physical education classes in schools across the country? The question of screening all children rather then only athletes has been raised as well which creates other logistical issues that require much deeper scientific evaluation.

    The cost effectiveness of the inclusion of ECG with history needs to be more closely examined once the population of ‘athletes’ is better defined.

    The advocacy and sports community:

    There are a number of advocacy groups, patient groups and sports programs who have an interest in ensuring our young people have access to cardiovascular care in a timely manner. These groups have a long-standing history with either the diseases that cause sudden death in the young, with young people and/or athletes directly.
    The concerns in this group center around the access to health care, quality evaluation of test results, education of those participating in screenings, patient privacy and the emotional well being of youth pre and post screening. For the most part they share the core goal of improving the lives of those who participate in athletics and maintaining their safety.
    The impassioned parent community:
    There is no more passionate group of individuals than those who have lost a child to sudden cardiac arrest or nearly lost a child from an aborted cardiac arrest. Many of them believe that if screening programs included electrocardiograms or echocardiograms that their child’s undiagnosed cardiac condition would have been detected and their lives would have been saved. They may be correct. The loss of a child is catastrophic and can lead those left behind looking for the most meaningful way to ensure that others do not suffer the same fate as their lost loved one.

    Some parents have sought to perform community heart screening events, most of which have collaborated with local hospitals or cardiologists who volunteer their time to assist with the event. Some programs use a questionnaire with an electrocardiogram and/or echocardiogram, some programs use all three.

    The quality of these screening programs has been varied and the data collection has been haphazard. It is unclear as to the true yield of these efforts and it would benefit all if the data was compiled and share through in a (de-identified) public access database.
    A number of these parents have sought to introduce legislation on a State level with no successful passage or implementation to date.

    The General Public:
    Largely, the general public is currently unaware of the concept of cardiac screening in the young. Over the past 5 years, there has been increasing news coverage about the concept with lukewarm response from the medical or general community. As the United States enters an era of reevaluation of its health care system the cardiac health of our children and young adults may well come into the public vernacular.

    Access to health care:

    Mechanisms for payment of screenings in the young:

    The use of the pre participation evaluation, PPE, screening questionnaire including the AHA’s 12 recommended items and a physical are normally a covered expense in the majority of health plans in the United States. In the event ECG screening were to be needed based on the results of the PPE and physical the ECG would be a covered expense. In the event that ECG screening indicated further cardiovascular work up was needed, in nearly all cases this would be viewed as a covered expense. If the child or young adult is covered by health insurance, either a private plan or State program, mandates, via ERISA, should be put in place requiring cardiac preventative care be a covered expense as a “Well Care” benefit. As most policies stand now cardiovascular testing for those under 40 years of age is rarely covered as a ‘Well Care” benefit. Currently there are no Federal or State mandates for such coverage and this remains a huge hurtle to overcome.



    Cont. in next thread.
    Last edited by Lisa Salberg; 09-17-2009, 01:04 PM.
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Re: Welcome -Please read prior to posting here

    Currently in the United States, there are over 47 million uninsured individuals. Many of those in the ranks of the uninsured are children and young adults. If a systematic cardiac screening program is to be instituted, a payment system must be identified for the uninsured to ensure they have equal access. The recent passage of SCHIP may insure that more uninsured children have coverage but it does nothing to insure that once they become adults they will have access to care.

    Another significant concern is the identification of abnormal test results which could later be interpreted as “pre existing conditions” and impact the ability to acquire health coverage in the future. While there have been campaign promises from the current administration there has been no legislation presented to remove the long-standing practice of using pre existing conditions as a means of rating policies and, in some cases, outright denial of coverage.


    Evaluation of test results:

    This process begins with the appropriate use of the AHA questionnaire by parents, athletes, trainers, coaches, school administrators, and others involved in youth athletics. The first, and most cost effective, tool that can be used to help identify those at risk for sudden cardiac arrest is the pre-participation screening tool. In the event any questions yield a positive answer further cardiac evaluation, by a cardiologist, should be required prior to participation in competitive athletics.

    If there is a need for an electrocardiogram, it is imperative that the results be interpreted accurately and it must be understood that between 10 and 15% of those with HCM will have a normal ECG. While ECG interpretation may sound like a relatively easy step, it may, in fact, be the most difficult part of the process. In the event a result is interpreted as ‘abnormal’ and therefore triggers additional testing there is a significant chance that this ‘abnormality’ will be viewed as inconsequential.

    If an echocardiogram is required to rule in or out hypertrophic cardiomyopathy (or other conditions), it is imperative that the quality of the test and the reading of the results are done by someone with ample experience. The HCMA has worked with thousands of those diagnosed with HCM and has found a significant lack of appreciation of HCM among cardiologists nationally. In some of these cases, patients with HCM have been told they did not have the condition by a cardiologist when, in fact, they did; and conversely, some have been labeled with the diagnosis only to find out there was no clinical reason for the diagnosis. In some cases those with HCM have participated in screening programs offered to the general public and have defied identification of their long standing HCM. There is a great deal of room for improvement, training and education among medical professionals to improve their ability to recognize HCM.

    To be more specific, some screening programs include a “limited” echocardiogram (lasting under 5 minutes or less). There has never been any peer-reviewed literature supporting the use of this type of screening as clinically effective for the identification of HCM. Due to the heterogeneity of HCM the limitations of “limited” echocardiograms are numerous and no data exists in the literature to identify what the views should be included in a “limited” echocardiogram and what the yield of this type of screening. Thus there are significant problems with the informed consent process as it is unclear as to what the parent or athlete is consenting too.

    Education:

    Parents need to understand the reasons the questions in the AHA pre-participation guide are important and why it is important they provide accurate information on these forms. They should also be encouraged to add information they feel important or expand on answers they may not know the answers to. For example, many parents do not know their child’s complete family medical history. This may be for a large numbers of reasons, which may include lack of communication with extended family, adoption, the child may be the product of egg or sperm donation, or more complicated family relationships. In addition parents and students may be afraid to answer questions honestly for fear of being disqualified from competition. Efforts should be made to ensure complete and honest answers are given. The positive answer to one or more of the AHA suggested questions or physical findings can result in referral for further evaluation. In the event of a positive answer to one or more of these questions the parent can request additional screening and in these cases there is a higher likelihood that insurance will cover the testing and evaluation.

    Coaches, athletic trainers, team administrators and those involved in the administration of sports, band, schools, club sports and related programs must create strong protocols for the use of pre participation questionnaires. These protocols should include training programs to educate parents and athletes of the importance of the form.

    In the event electrocardiogram, ECG, or echocardiogram are included in a screening program it must be clearly noted to the participants that up to 15% of those with the leading cause of sudden cardiac arrest, HCM, may have normal test ECG. In addition, if limited echocardiogram is used for screening it should be clearly explained that the role of “limited” echo has not been proven diagnostic for HCM.

    Privacy:

    In the event that cardiac screenings are being conducted in a community screening event, the location of the screening and maintenance of records are important factors. Children have a right to expect privacy of their medical information and providing mass screening environments does not lend itself to ensuring privacy is maintained. Specifically, in the event a screening is conducted in a group environment at a school or similar venue with an entire team required to attend, the discovery of a potential problem in an athlete that requires further evaluation may require that athlete to be benched pending further test results. This creates an environment that appears nowhere else in the health care system as a patient can not be assured that his or her medical data is theirs to share with whom they choose, when and if they choose to do so. There are physiological implications to the athlete in these situations that must be addressed.

    Pre and post screening:

    Young people, parents, coaches, trainers, administrators, and others need to completely understand the screening process prior to being able to implement any program. There are still many questions that have yet to be addressed about the psychological implications of screening programs on all those involved and there are no programs in place to deal with the many potential outcomes of screening.

    There are many areas that must be considered prior to holding or participating in a screening event including either ECG or Echo in addition a physical and PPE form including - no clear expectations about the amount of time the screening results are valid for, no protection from discrimination in access to health care, disqualification from scholarship opportunities, access to support mechanisms in place to deal with potential diagnosis, disqualification from competitive athletics, difficulties acquiring life insurance later in life, and the fact there is currently no research on the impact of the screening processes impact on the healthy population.

    Cont in next thread....
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment


    • #3
      Re: Welcome -Please read prior to posting here

      Italian vs. United States Health care system and laws:

      In the United States we have no true health care system that ensures all legal residents access to care. Health insurance is managed State by State and only under Employee Retirement Income Security Act (ERISA) are there mandates on what must be covered under health care plans that fall under its governance. Many health plans including self funded programs are not covered by ERISA and therefore not subjected to Federal mandates. Each State has its own health Insurance Board which approves plans to be sold in the individual state. There are no guarantees of health care in any State, with the exception of Massachusetts, and pre existing conditions may be held against an individual for rating of policy premiums or denial of coverage outright. There are some State sponsored health plans that are funded Federally (SCHIP) but this coverage is for children and leaves them uninsured when they turn 18 years of age. Medicare and Medicaid insurance generally do not cover children who may be involved in athletics, although some children may fall under these Federal and State forms of insurance. Physician compensation is not governed by any formal body and hospitals are free to charge what the market will bare, and the insurance companies negotiate. The uninsured pay for services or apply for charity care within a hospital and are granted services only if they can prove financial hardship.
      In Italy the health care system is funded based on a regressive payroll tax. All residents are covered in the health care system. The tax starts at 10.6% of income for the first €20,000 (approximately $27,000us) and drops to 4.6% of income between €20,100 and €77,480 (approximately$27,000and $102,000us). The rest of the funding comes from federal and regional general taxation (i.e.: income and value-added taxes). The regions are responsible for health care provision. The Ministry of Health funds these regions according to a formula based on weighted capitation and past spending. Then the regions allocate these funds to Local Health Authorities (LHA). Private health insurance in Italy is uncommon, but is occasionally offered by employers. It is not possible to opt out of the National Health Insurance system and insurance premiums are not tax deductible. Many Italians do pay for private health care. It is estimated that about 35% of Italians use at least some private health services, but the public sector certainly dominates the private in terms if its relative importance. Physician Compensation, physicians are paid via capitation. Hospitals are paid via DRGs.
      Italians have limited choice of their physician but more than in the UK or in Spain. They must register with a general practitioner (GP) in their LHA. For any specialist services, patients must get a referral from their GP. Copayment/Deductibles. Inpatient and primary care are free. For tests, diagnostic procedures and prescription drugs, copayments are as high as 30%. However, 40% of the population (e.g.: the elderly, pregnant women, kids) are exempt from these copayments.
      Laws governing student athletes
      In Italy, since 1950, it has been mandatory for all professional and amateur athletes to obtain medical certification of their eligibility to participate in their sport. In 1971, the government introduced laws intended to safeguard the health of all those practicing sport at both competitive and non-competitive levels and that regulate preventive PPS. Competitive athletes must undergo a yearly preventive screening protocol including a past medical history, clinical evaluation, urinalysis, electrocardiogram (ECG) at rest and after a step test, and pulmonary function tests. This evaluation can only be performed by doctors holding a diploma of specialist in sports medicine and registered with the Italian Sports Medicine Foundation (FIMS). These professionals are legally responsible for the accuracy of this assessment, being the final judges of the subject’s eligibility to participate in sport. At present, in Italy, about 5 million people undergo the cardiovascular PPS each year.
      In contrast to the Italians the United States has no Federal law mandating health care services to students. It would be up to each State to set up laws that would regulate such screening. If the Federal government wishes to draft legislation on this issue that would preempt any State laws that are weaker then the Federal law. To date there are no States with legislation mandating pre participation screening questionnaires or dictating which diagnostic test to use. In the United States the only Federal law governing athletics in public schools is title 9 which mandates that males and females have equal access to participate.
      In conclusion, there is no lack of passion from any of the players in this arena. There are a great many questions for public debate and opportunities for change. The real question is do Americans believe this is an issue they should be concerned with and are they willing to make fundamental changes in the health care system that may facilitate change in this area. In a resent article from Dr. Paul Thompson he concluded “Experience suggests that when experts disagree, there is a dearth of reliable data. The present data suggest that the problem, at least in the United States, is not so huge that we must leap to action. We need more and better data on the cardiovascular risks of athletics, the false-positive rate of screening strategies when used by nonexperts, the cost of tests and procedures generated by screening, and if possible, actual controlled trials of screening strategies. Good data often simplify complex problems.”
      References:
      Recommendations and considerations related to preparticipation screening for cardiovascular abnormalities in competitive athletes: 2007 update: a scientific statement from the American Heart Association Council on Nutrition, Physical Activity, and Metabolism: endorsed by the American College of Cardiology Foundation.
      Maron BJ, Thompson PD, Ackerman MJ, Balady G, Berger S, Cohen D, Dimeff R, Douglas PS, Glover DW, Hutter AM Jr, Krauss MD, Maron MS, Mitten MJ, Roberts WO, Puffer JC; American Heart Association Council on Nutrition, Physical Activity, and Metabolism.Circulation. 2007 Mar 27;115(12):1643-455.
      Bethesda Conference #36 and the European Society of Cardiology Consensus Recommendations revisited a comparison of U.S. and European criteria for eligibility and disqualification of competitive athletes with cardiovascular abnormalities.
      Pelliccia A, Zipes DP, Maron BJ.J Am Coll Cardiol. 2008 Dec 9;52(24):1990-6
      Cardiovascular pre-participation screening of young competitive athletes for prevention of sudden death: proposal for a common European protocol. Consensus Statement of the Study Group of Sport Cardiology of the Working Group of Cardiac Rehabilitation and Exercise Physiology and the Working Group of Myocardial and Pericardial Diseases of the European Society of Cardiology.
      Corrado D, Pelliccia A, Bjørnstad HH, Vanhees L, Biffi A, Borjesson M, Panhuyzen-Goedkoop N, Deligiannis A, Solberg E, Dugmore D, Mellwig KP, Assanelli D, Delise P, van-Buuren F, Anastasakis A, Heidbuchel H, Hoffmann E, Fagard R, Priori SG, Basso C, Arbustini E, Blomstrom-Lundqvist C, McKenna WJ, Thiene G; Study Group of Sport Cardiology of the Working Group of Cardiac Rehabilitation and Exercise Physiology and the Working Group of Myocardial and Pericardial Diseases of the European Society of Cardiology. Eur Heart J. 2005 Mar;26(5):516-24. Epub 2005

      Preparticipation cardiovascular screening in young athletes: current guidelines and dilemmas.
      Seto CK, Pendleton ME. Curr Sports Med Rep. 2009 Mar-Apr;8(2):59-64.
      Sudden deaths in young competitive athletes: analysis of 1866 deaths in the United States, 1980-2006.
      Maron BJ, Doerer JJ, Haas TS, Tierney DM, Mueller FO. Circulation. 2009 Mar 3;119(8):1085


      Electrocardiograms should be included in preparticipation screening of athletes
      Myerburg RJ, Vetter VL. Circulation. 2007 Nov 27;116(22):2616-26; discussion 2626
      “The Grass Is Not Always Greener: A Look at National Health Care Systems Around the World” Cato Policy Analysis no. 613. Tanner, Michael D. (2008)
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

      Comment


      • #4
        Re: Welcome -Please read prior to posting here

        For those of you who have read the 3 posts above let me sum up by saying this.

        The HCMA has not endorsed any screening program at this point. We have seen some excellent programs conducted in research centers that hold promise for answering some of the important questions regarding the athletic population.

        I do have to share a story with you the board that is a sober reminder that screening programs are currently not perfect and in fact may give a false sense of security to some.

        On August 5 our phone rang - it was a mom who had just learned that HCM was the cause of death for her 17 year old son - he passed way the day before. He had participated in commuity based screening program and the family was never advised of the results of the ECG.
        My point here is a hard one.... tests do not save lives -appropriate evaluation of the test - the patient and a full understanding of family history... that may make a more meaningful difference.

        We all need to do better- our kids are worth it.

        Lisa
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)

        Comment


        • #5
          Reflections on screening athletes

          Glad to see HCMA is taking the issue of testing on. I was a runner in my 20's into my early 30's when sleep apnea hit! In evaluating me for apnea the pulmonary specialist 'heard' a murmur....and the rest is history. Had I not gotten the HCM (then IHSS) dx at that point, I was planning to run a marathon. I don't think I would have finished it. The docs told me to back off the running. I did take up walking instead.

          Comment

          Today's Birthdays

          Collapse

          Working...
          X