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Popular Charity Heart Screenings For Teens May Cause More Problems Than They Solve

Kaiser Health News - Wed, 02/22/2017 - 4:10pm

Dozens of not-for-profit organizations have formed in the past decade to promote free or low-cost heart screenings for teens. These groups often claim such tests save lives by finding abnormalities that might pose a risk of sudden cardiac death.

But the efforts are raising concerns. There’s no evidence that screening adolescents with electrocardiograms (ECG) prevents deaths. Sudden cardiac death is rare in young people, and some physicians worry screening kids with no symptoms or family history of disease could do more harm than good. The tests can set off false alarms that can lead to follow-up tests and risky interventions or force some kids to quit sports unnecessarily.

“There are harms that I don’t think a lot of people realize,” said Dr. Kristin Burns, who oversees a two-year-old registry at the National Institutes of Health of sudden deaths in people under 20. It’s one of several efforts aimed at gathering better data about cardiac abnormalities in kids.

Studies using limited data have found between one and four sudden cardiac deaths occur annually per 100,000 kids between ages 1 and 18. By comparison, 22 out of 100,000 U.S. teens are killed in accidents, including those involving motor vehicles, and nine out of 100,000 commit suicide, according to the Centers for Disease Control and Prevention.

This KHN story also ran on NPR. It can be republished for free (details).

Some screening advocates believe sudden cardiac deaths are underreported and not enough is being done to spare families from the fate of losing a child. “We have to acknowledge that every kid who drops dead, they’ve been failed by the current system,” said Darren Sudman, who founded Simon’s Fund, a screening effort in greater Philadelphia in memory of his infant son, who died of an arrhythmia.

Screening programs say they’re educating parents about the risks. “What we want to emphasize is, make sure your kid is heart-safe,” said Dr. Jonathan Drezner, a sports and family medicine specialist in Seattle at UW Medicine and medical director of the local Nick of Time Foundation.

Enthusiasm for ECGs, which measure the electrical activity in the heart to detect abnormalities, grew after a 2006 study showed they lowered death rates among athletes in Italy. But research in other countries has not yielded similar results, and the Italian researchers recently were accused of refusing to share their data so it could be evaluated independently.

Some 60,000 to 70,000 U.S. teens were screened in 2016, most by foundations created by families who lost a child to sudden cardiac death, said Darren Sudman, who runs an online directory, Screen Across America. It’s unclear whether high school athletes face higher risk than non-athletes, so screening programs usually invite everybody.

Screenings typically are held in high schools and overseen by volunteer cardiologists, with funding from individuals and businesses including hospitals. A handful of hospitals and for-profit companies also run screenings.

It may be presumptuous to claim ECGs save lives, but parents often believe they do, said Sudman. “If I find a heart condition, I promise you there are parents who are thanking me for savings their kid’s life.”

That perception is stoked by tragic stories in the media of children who died suddenly after never reporting a symptom. Meanwhile, the drawbacks of ECGs are seldom depicted. As many as 1 in 10 ECGs detects a potential abnormality, and the emotional and financial toll of such a finding can be significant — especially when they turn out to be wrong.

Following a screening ECG and echocardiogram last fall, Daniel Garza, 16, a talented sophomore basketball player in San Antonio, was told he had hypertrophic cardiomyopathy, a thickening of the heart muscle and the most common cause of sudden cardiac death in young people. He was advised to quit all exercise, at least temporarily.

“We were shocked, just shocked,” said his mother, Denise. She said her son became depressed when he couldn’t play the sport he enjoyed and excelled at. “He came home and cried himself to sleep. He said, ‘Mom, why did God give me this gift to take it away?’”

The Garzas traveled to the Mayo Clinic in Rochester, Minn., where further tests indicated his enlarged heart was a benign condition known as athletic heart, a result of intense training. His mother estimates that correcting the misdiagnosis cost more than $20,000, including medical costs, travel and lost work.

Daniel has returned to the basketball court. Still, Denise Garza said the emotional toll was rough. “It was one of the hardest things my family has ever endured.”

Several cardiologists said they often see cases like this or worse. Even after follow-up testing, it can be unclear which cases are life-threatening, so kids with low risk could be restricted from exercise or given life-altering interventions such as implantable defibrillators, surgery or anti-arrhythmic medications.

Medical groups have wrestled with the issue. The American Heart Association and the American College of Cardiology recommended in 2014 against mass ECG screening, noting that sudden cardiac death is rare in teens and false positives generate “excessive and costly second-tier testing.” ECGs also miss at least 1 in 10 cases of hypertrophic cardiomyopathy and more than 9 in 10 cases of congenital anomalies, the second-most-common cause.

But their expert panel accepted voluntary screening “in relatively small cohorts” if there’s physician involvement, quality control and a recognition of unreliable results and ancillary costs.

By contrast, there’s broad support for automated external defibrillators, which have been shown to prevent deaths at schools and other public places. Some foundations focus their efforts on disseminating the defibrillators.

One problem with ECGs is a lack of good data.

“There’s no evidence we have that ECG screening saves lives,” said Dr. Jonathan Kaltman of the NIH’s National Heart, Lung, and Blood Institute. “There’s never been a controlled clinical trial, which is the only way to answer that question.”

Efforts are underway to improve the accuracy of the screening programs. Some are adding echocardiograms, which use ultrasound to produce images of the heart, to verify potential abnormalities. Advocates say false positives have dropped as a result of better interpretation guidelines, known as the Seattle Criteria, which are expected to soon be endorsed by cardiology societies in revised form.

But the criteria are not perfect, and there’s a “giant gap” in training cardiologists to use them, said Drezner, one of the developers. He’s also a medical adviser for Parent Heart Watch, a consortium of foundations. “If I was a parent, I’d want to know about the experience of the (cardiologists) and what they’re going to do to help my kid if they have a positive screen.”

At the urging of screening advocates, the NIH partnered with the Centers for Disease Control and Prevention to rigorously track cardiac deaths as part of a Sudden Death in the Young Case Registry. So far a handful of states and counties have joined the effort, which helps local health departments collect better data. The goal is to standardize death investigations and get a firm handle on how often kids die from heart abnormalities as well as the role of factors such as genetics. Initial findings are expected to be available in about two years. The NIH is also funding three university-based research groups to answer key questions about sudden cardiac death in the young.

Some screening organizations are getting behind a nascent initiative with the Cardiac Safety Research Consortium to harness their own screening data for research. It would require standardizing their practices and tracking outcomes, which organizations aren’t now equipped to do.

“Screening is happening. We can’t avoid that,” said Dr. Salim Idriss, director of pediatric electrophysiology at Duke University and co-chair of the initiative. “We have a really good opportunity to get the data we need to make it better.”

Separately, the UT Southwestern Medical Center in Dallas recently began a four-year pilot study involving athletes and band members at eight high schools to determine the feasibility of a full-scale randomized controlled trial.

A valid finding on the overarching question of whether ECG screening saves lives could require at least 800,000 participants and a cost of $15 million, said Dr. Benjamin Levine, a cardiologist and the lead researcher.

The pilot is partly a response to legislation that would mandate ECGs for student athletes in Texas. A similar bill was also introduced in South Carolina. Both bills failed, but it’s expected there will be more attempts to mandate ECGs, leaving state legislators looking for better guidance.

“We’re not going to solve this by having more debates, but by having more data,” Levine said.

Categories: Health Care

An Interview with Geo Nikolov, Legal Metadata Intern

In Custodia Legis - Wed, 02/22/2017 - 3:08pm

This week’s interview is with Geo Nikolov who is working at the Law Library of Congress for several months as an intern describing and creating metadata for a collection of Hispanic Legal Documents that span from the 15th to 19th centuries.

Describe your background.

My background is strongest in the humanities (language, literature, and culture).  I was fortunate to have the opportunity to receive my learning at the source by studying abroad in Germany and Spain during high school (Lübeck, Germany), college (Bremen, Germany) and for my master’s (Málaga, Spain).  I am also comfortable doing scholarly research in geoscience.  Through a recent remote internship with the Law Library, as well as through my training in court interpretation, I have gained better familiarity with the U.S. legal system.

What is your academic/professional history?

Selfie by Geo Nikolov.

I graduated with a B.Sc. in earth sciences from Dickinson College in 2014, with additional coursework in Spanish and German.  Through a graduate linkage agreement, I was awarded a spot at the University of Málaga, which is located in the Autonomous Community of Andalusia, Spain.  There I completed my master’s degree in Spanish language and literature in 2015.  My thesis examined Thomas Mann‘s reading of Don Quixote.

In the spring of 2016, I worked on the Handbook of Latin American Studies (HLAS) and the Archive of Hispanic Literature on Tape (AHLOT) as an intern of the Library of Congress Hispanic Division.  In 2016, I also worked for an independent publisher/book distributor for a brief period.  At present, I am gaining experience as a court interpreter with Maryland‘s courts.

How would you describe the work you do to other people?

I use subject terms and controlled vocabularies to describe the contents of legal briefs and other official documents from the Iberian Peninsula and Latin America, which are in the holdings of the Law Library of Congress.  I also look up the translations and English equivalents of certain terms, and make sure to draw connections between certain subject headings (e.g., place names and personal names) as these are represented in various Spanish languages, including Castilian, Catalán and Aragonese.  These documents are from the 15th – 19th centuries.

Why did you want to work in the Law Library of Congress?

I thought this project would be an interesting way to learn about how Spanish was and continues to be used in a legal setting and to become better acquainted with its prestigious tradition, alongside literary texts.

What is the most interesting fact you have learned about the Law Library of Congress?

The first books for the Law Library were personally selected by Chief Justice John Marshall, when it was formally established in 1832.

What’s something most of your co-workers do not know about you?

I published a poetry book titled Paseos marítimos in Málaga, Spain, and it is now part of the Library of Congress collection.

Categories: Research & Litigation

An Interview with Seth Brostoff, Legal Metadata Intern

In Custodia Legis - Wed, 02/22/2017 - 3:02pm

This week’s interview is with Seth Brostoff who is working at the Law Library of Congress for several months as an intern describing and creating metadata for a collection of Hispanic Legal Documents that span from the 15th to 19th centuries.

Describe your background.

I live in Cleveland Park.  I’m originally from Charleston, South Carolina, but I’ve also lived here (twice), California, Pennsylvania, Delaware, Virginia, and the U.K.

What is your academic/professional history?

Photo by T. Brostoff

 I have an undergraduate degree in economic history from the University of Pennsylvania and a J.D. from the University of Virginia School of Law.  After law school, I moved to Wilmington, Delaware.  I practiced bankruptcy and corporate law in Delaware for five years.  I also have a master’s degree in history from the University of St Andrews.

How would you describe the work you do to other people?

I create metadata descriptions for 15th-19th century legal documents written in Romance languages, including old and modern Castilian, Latin, Catalán, and Aragonese.  The Law Library has an impressive collection of legal briefs from early modern Spain, which they will be making accessible online.  In order to increase their retrievability, we have to assign subject terms.  Assigning subject terms usually requires research, sometimes in the original languages, to verify personal names and party relationships.

Why did you want to work in the Law Library of Congress?

I’m very interested in Spain and Latin America, as well as legal history; so, the project looked exciting.

What is the most interesting fact you have learned about the Law Library of Congress?

The Law Library’s blog has been regularly included in the ABA Journal’s annual list of best law blogs.

What’s something most of your co-workers do not know about you?

I went to high school for one year in the attic of the Library of Congress Jefferson Building.  Along with the Senate and Supreme Court, the House of Representatives traditionally employed high school students as pages.  The House pages went to a special school on the top floor of the Jefferson Building (which I am told is now the Library of Congress Poetry and Literature Center).

My congressman appointed me as a page for the 2000-01 school year, but I didn’t spend that much time in the Library because the school day ended at 9:30 or 11:30 a.m., depending on the House’s schedule.  The House no longer employs pages, and the page program was discontinued.

Categories: Research & Litigation

TANF Block Grant Offers a Cautionary Tale for Medicaid

Center on Budget and Policy Priorities - Wed, 02/22/2017 - 11:42am

House Republicans plan to fast track their proposal to cut federal Medicaid funding by converting the program to a block grant or per capita cap and phasing out the Affordable Care Act’s Medicaid expansion, House Republican talking points released last week

Categories: Benefits, Poverty

First Edition: February 22, 2017

Kaiser Health News - Wed, 02/22/2017 - 6:21am
Categories: Health Care

A New Diagnosis: ‘Post-Election Stress Disorder’

Kaiser Health News - Wed, 02/22/2017 - 5:00am

Wally Pfingsten has always been a news junkie. But since President Donald Trump was elected, he’s been so anxious about the political tumult that even just having the TV news on in the background at home is unbearable.

“It’s been crippling,” said the 35-year-old San Mateo, Calif., resident and political moderate who has supported both Democratic and Republican candidates in the past. “I feel angry, really, really angry, far more angry than I expected to be.”

He’s tried hard to quell his anxiety. First, he shut down his Facebook page to limit his exposure to the daily soaking of news from Washington. But not knowing the goings-on made him anxious, too. He found himself sneaking onto the Facebook account he made for his dog. “I felt like I was cheating,” he said.

Pfingsten is not alone in his politics-induced anxiety — it’s so common it’s been given an unofficial name: Post-Election Stress Disorder. Mental health professionals around the country, especially those working in Democratic strongholds, report a stream of patients coming in with anxiety and depression related to — or worsened by — the blast of daily news on the new administration.

This KHN story also ran on CNN.com. It can be republished for free (details).

In the past, therapists say it’s been fairly uncommon for patients to bring up politics on the couch. “It is big money to talk about politics with me ― that is not what we do!” said Maria Lymberis, a psychiatrist in Santa Monica, Calif.

But that was before “fake news,” “alternative facts,” “repeal and replace,” contested confirmations, travel bans, protests and suits over travel bans, suspicions about Russian influence and the departures of the acting attorney general and the new national security adviser. Among other things.

Requests for therapy appointments to Talkspace, an online therapy portal based in New York City, tripled immediately following the election and have remained high through January, according to the company. In particular, Talkspace has seen a steady increase in requests from minorities, including Muslim-Americans, African-Americans, Jews, gays and lesbians.

“In my 28 years in practice, I’ve never seen anything like this level of stress,” said Nancy Molitor, a psychologist in the Chicago suburbs. She says the vast majority of her patients — from millennials to those in their 80s — are bringing up politics in their therapy sessions. “What we’re seeing now after the inauguration is a huge uptick in anxiety.”

Many of her patients say they are having trouble sleeping and focusing at work or are fighting more with family members, she said.

Mental health professionals around the country, especially in Democratic strongholds, report a stream of patients coming in with anxiety and depression. (Andrew Harrer/Bloomberg via Getty Images)

I have people who’ve told me they’re in mourning, that they’ve lost their libido,” Molitor said. “I have people saying the anxiety is causing them to be so distracted that they’re blowing through stop signs or getting into fender benders.”

The anxiety appears to be widespread. Fifty-seven percent of Americans report that the current political climate is a very or somewhat significant source of stress, and 40 percent say the same about the outcome of the election, according to an online survey of 1,019 adults conducted by the American Psychological Association after the inauguration. Between August 2016 and January 2017, the overall average stress level increased significantly for the first time since the Stress in America survey began 10 years ago.

And it’s not Democrats: a quarter of Republicans report that the outcome of election is a significant source of stress for them.

“I’m seeing lot of anxiety and anger on both sides,” says Elaine DuCharme, a psychologist in Glastonbury, Conn. “People who are Republicans are afraid to tell anyone. They’re afraid that everybody thinks that every Republican thinks exactly as Trump does, and support every single thing he does.”

She says some of her patients are particularly concerned about maintaining civil relationships with friends and loved ones who have different political opinions. “People are walking on eggshells,” DuCharme said.

Karri King, 56, who lives in Buckeye, Ariz., and voted for Trump, says her experiences on social media have left her feeling sad and hopeless. “There’s so much negative from all these stupid Facebook posts acting like the world is going to end. And it’s false. And I can’t do a thing about it.”

King said she’s tried to engage civilly with people online who disagree with her, but “every time [Republicans] turn around, we’re bashed.”

When you say “a bunch of idiots” voted Trump in, “you’re talking about half of all Americans! We were hopeful at first, and now we’re angry and tired of being blamed,” said King. “Nobody wants to listen anymore, and that’s where my sadness comes from.”

Of course, in some parts of the country, especially those that are overwhelmingly Republican and outside big cities, people seem relieved if not uplifted by the new president’s flurry of executive orders and appointments.

Kristin Addison-Brown, a psychologist in rural Jonesboro, Ark., says before the election, some of her patients were voicing concerns about a possible Clinton victory. But since then, “it’s pretty much been crickets for my patients. They got their guy, so they’re not stressed anymore.”

Nancy Cottle, a Trump supporter in Mesa, Ariz., has been riding high since the election. “We got to go to the inauguration, and, oh, it was a wonderful experience! We got to go to the Trump hotel and have breakfast and then lunch there, and it was just great. The inauguration itself was very inspiring.”

Cottle, 64, has been struggling to understand the public outcry about Trump. “It’s like the sky is falling ― but a lot of that is just drama,” she said. “I feel encouraged, I feel hopeful. I can’t wait to wake up and see what the day’s going to bring and what else is going to happen.”

That same daily dose of news ― and the uncertainty of what will happen next ― rattles many Trump opponents.  But, like Pfingsten, they can’t seem to quit their news consumption cold turkey.

“Part of the brain wants to know what’s going on, and you’re drawn to watching CNN or reading the news. And then the other part of you is saying no, no, this isn’t good for me!” says Molitor, the Chicago psychologist. “It’s unfortunately like driving by a car accident ― they know it’s not good for them [to gawk], but it’s hard to stop.”

Molitor recommends patients stay engaged but limit the time they spend on Facebook or watching the news. Focus instead on other things you enjoy, she advises ― calling a friend, taking a walk or reading a book.

“I never read the Harry Potter books, so I’m reading Harry Potter,” says Matthew Leal, a 34-year-old San Francisco resident who found himself sinking into a depression after the election. “Someone could see this and say I’m being totally escapist right now, but I feel like it’s kind of what I need.”

Categories: Health Care

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