What Your Shrink Thinks? Pilot Study Opens Psych Records To Patients

(Life Mental Health/Flickr via Compfight)

(Life Mental Health/Flickr via Compfight)

Here’s how far we’ve come beyond the old stereotype of the inscrutable psychiatrist who refuses to do anything more than nod and hum. If you’re a patient in a pilot program just now getting under way at Boston’s Beth Israel Deaconess Medical Center, you’ll soon have a whole new window into your psychiatrist’s thoughts: the mental health notes in your own medical record.

Patient access to personal medical records is a growing trend, but the pilot takes it a pioneering next step, into mental health records that are often kept closed to patients. The program’s rationale — the expectation that the tactic will lead to better care — is laid out in “Let’s Show Patients Their Mental Health Records,” an article in this week’s Journal of the American Medical Association.

I spoke with its first author, Dr. Michael Kahn, a psychiatrist at Beth Israel Deaconess. Our conversation, lightly edited:

CG: Here’s my colleague’s response to the idea of patients reading their psychiatrists’ notes: ‘Omigod, that’s terrifying! Do you really want to know what they think of you, especially if you already have issues?’ How would you respond?

MK: My main response would be that ‘what they think of you’ might actually be a great relief. Many patients are quite frightened that the doctor ‘will think I’m crazy,’ and the meaning of that varies from patient to patient. Mostly, those patients are not out of touch with reality; they’re just overwhelmed, and they’re often very reluctant to ask their doctor about it because they’re afraid their doctor will say, ‘Yes, you are crazy.’

So when they read in the note that “The patient is struggling with anxiety or depression, and should get better with this treatment,” that’s often a great relief to them, because they often see they’re not as impaired or deficient or defective as they feared.

I imagine the response from many psychiatrists would also be, ‘Omigod, that’s terrifying.’ You write in JAMA that this ‘feels like entering a minefield, triggering clinicians’ worst fears about sharing notes with patients.’ And you mention specific fears — how will a patient with a personality disorder react upon learning of that diagnosis? What if patients are outraged by the terms used? How do you respond to doctors’ fears?

The first thing is to recognize that it’s a totally natural, understandable and honest fear. I think we all learn in our professional development to use these terms — you might call them jargon — that are often but not always accurate, and often but not always have more pejorative connotations.

I think clinicians know this and are concerned that if patients read, for example, that they have Borderline Personality Disorder, then they will feel insulted, shocked, demeaned. I think this is a totally understandable and reasonable anxiety on the clinician’s part, but I think for many patients — and I’ve seen this many times — if it’s introduced to them in a tactful way, they can get the message that “The reason your life is in such turmoil is not because you’re a bad person but because you have this thing we call Borderline Personality Disorder that has these features.” And patients often say, ‘Oh my God, that’s me!’ and that’s actually a relief; they feel less alone and stigmatized.

So overall, the expectation is that patients being able to see these notes would far more often be helpful than harmful? Continue reading

Life Lessons From An Ultra Rare, Potentially Fatal Disease

Sue Levy and her family on vacation in Buenos Aires fall 2013. (Courtesy)

Sue Levy and her family on vacation in Buenos Aires fall 2013. (Courtesy)

By Dr. Annie Brewster
Guest contributor

What if you were suddenly diagnosed with a potentially fatal disease just when your life, work and marriage were on track and your plans to start a family were underway?

That’s what happened to Sue R. Levy.

In 2008, at age 37, she was diagnosed with Pulmonary Lymphangioleiomyomatosis, otherwise known as LAM, a rare, chronic, progressive lung disease in which the lungs fill up with cysts. The result is gradual destruction of the normal lung architecture, compromised breathing and, in many cases, an eventual lung transplant — a procedure with major risks. The LAM Foundation reports 10-year survival, following a lung transplant, at 47 percent.

Fueled by estrogen, LAM primarily affects women in their childbearing years. With only 1,300 documented cases in North America, LAM is poorly understood; currently, there are a few experimental medications in use, but no proven treatments exist.

Prior to the diagnosis, Sue, who lives in Brookline, Mass., had a successful career as a marketing executive, she was happily married, and she and her husband had decided to have kids. Though they struggled with infertility, undergoing six unsuccessful rounds of IVF, Sue still felt that this would work out eventually.

“My whole life I thought the way the world worked is that if you were a good person and you worked hard you could avoid bad things,” she said. LAM changed everything.

Suddenly, Sue was forced to redefine herself as someone with a chronic disease and squarely face her own mortality. In addition, she had to let go of some of her dreams, notably, her desire to get pregnant, as the high levels of estrogen associated with carrying a child would accelerate her lung destruction.

Initially, she was angry. But the disease helped her focus on what she really cares about: she went to school to study nutrition and became a natural foods chef. In 2011, inspired by her own healthier lifestyle changes, she quit her marketing job and started Savory Living-Healthy Eating, a nutrition and health company that provides online healthy eating and cooking classes.

In addition, Sue and her husband now have two young daughters, conceived using egg donors and a gestational carrier.

Listen to Sue’s story here:

Interview highlights:

From ‘Healthy’ To ‘Terrifying’

If you had asked me before my LAM diagnosis I would have told you that I was a healthy person, that I am living a healthy life. There isn’t a disease in my family. This is something I don’t have to worry about and I’m doing great. What was so interesting is that the signs couldn’t have been clearer that I wasn’t. I was heavier, the energy wasn’t great. I had a lot of digestive problems and I faced infertility. But I just thought that was the way life was. I had had a lot of pain and it felt almost like this boa constrictor was around my midsection squeezing my rib cage.

So I went to the doctor and he said ‘You know I’m worried that maybe you have a blood clot in your lung, I want to go get a CT scan.’ And they did the scan and on our way back to our house I got a call from the doctor and he said ‘You need to come in right away,’ and I said ‘Oh, is it a blood clot in my lung?’ And he said no. And I said ‘Oh great!’ And he said ‘No, you need to come in right away.’

We got into the office and he actually said to me because he knew we were trying to conceive, and he said, ‘Life as you know it is about to change considerably. Continue reading

Women’s Anal Sex More Common And Still Taboo, Says Researcher

Sexual health researcher Debby Herbenick often says what the rest of us are merely just silently, sheepishly thinking.

A few years back, Herbenick, a researcher at Indiana University, co-director of the Center for Sexual Health Promotion, and a sexual health educator at the Kinsey Institute, raised the issue of pain during sex based on her landmark study of sex in the U.S. And here she is again, discussing the pros, cons and surprising new data on women and anal sex in America.

It’s worth reading her full report at Salon, titled Anal Sex: Science’s Last Taboo, but here’s a snippet:

That anal sex remains taboo may explain why a study about anodyspareunia – that is, pain during anal penetration – received little attention when it was published in the Journal of Sex & Marital Therapy. The study should have turned heads: It was the first research on anodyspareunia among women; it was conducted by a well-respected scientist (Dr. Aleksander Stulhofer from the University of Zagreb); and it was centered on young women and sex. That’s often the kind of research that attracts media attention (Young women sext! They get pregnant! They give oral sex! You get the picture …). However, anal sex remains such a strong taboo that this otherwise important study barely turned a head.

younglove

Except it did turn mine. Here’s why. In an incredibly short period of time, anal sex has become a common part of Americans’ sex lives. As of the 1990s, only about one-quarter to one-third of young women and men in the U.S. had tried anal sex at least once. Less than 20 years later, my research team’s 2009 National Survey of Sexual Health and Behavior found that as many as 40-45 percent of women and men in some age groups had tried anal sex. With its rising prevalence, I felt it was important to devote a chapter of my first book, “Because It Feels Good,” to anal health and pleasure — only to find that a magazine editor wouldn’t review it because the topic of anal sex was “not in the best interest of our readership.” Even though nearly half of American women in some age groups have done it! She added, “In the correct circles, I personally will be suggesting the book to those with whom I can share such a resource.”

Hmm. The correct circles. Which ones would those be? The ones where scores and scores of women openly sit around talking about anal sex between glasses of wine? Continue reading

Mental Health Parity: If Not Now, When?

According to ABC News, the latest alleged Ft. Hood shooter was struggling with a number of mental health problems, “ranging from depression to anxiety to sleep disturbance,” and in the midst of being evaluated for post-traumatic stress disorder.

If true, it’s a familiar story of a stressed-out soldier with mental health issues and easy access to guns: we’ve been here before.

Of course, we don’t know exactly what kind of care or treatment this shooter was receiving — and the VA system is generally better than others. Still, it’s worth reviewing the history of legislation to put mental health services on equal footing with all other medical care.

(ndanger/flickr)

(ndanger/flickr)

The latest policy brief published in the journal Health Affairs, documents the convoluted history of mental health parity, the idea that mental health care and treatment be comparable with all other types of “physical” medical care (and why make the distinction, anyway)?

Parity efforts began in earnest in the late 1990s, but still aren’t fully implemented today, despite widespread support, including from notable advocates like former Congressman Patrick Kennedy.

The paper examines some of the obstacles remaining to true mental health parity, including these:

…”Critics have argued that parity legislation alone is not enough to fix other underlying problems in how our health system provides access to treatment of mental health and substance use disorders.

The supply and availability of mental health providers has been the subject of numerous research articles. A 2009 Health Affairs article by Peter Cunningham found that two-thirds of primary care physicians reported that they were unable to get outpatient mental health services for their patients–more than twice the percentage who reported trouble finding specialist referrals, nonemergency hospital admissions, or imaging services. Mental health professionals tend to be concentrated in high-population, high-income areas, and the lack of mental health care providers in rural areas as well as in pediatrics has been well documented. Finally, there is still a stigma associated with receiving mental health or substance use treatment. Eliminating the stigma and increasing the availability of high-quality providers are two keys to increasing access to care.

…Much of the debate in implementing parity is around determining equivalence of services between mental health/substance use benefits and medical/surgical benefits. Some of the treatments for mental health and substance use disorders do not have an equivalent medical/surgical treatment, Continue reading

Circumcision Boost: Study Cites Benefits, Notes Foreskin-Related Health Problems

New findings may offer a boost to proponents of newborn male circumcision: Researchers in the U.S. and Australia report that the health benefits of undergoing the procedure “exceed the risks by over 100 to 1,” and note that “over their lifetime, half of uncircumcised males will contract an adverse medical condition caused by their foreskin.”

The review, published online in the Mayo Clinic Proceedings, bolsters the position of mainstream physician groups, such as the American Academy of Pediatrics, which supports insurance coverage of the practice and full access for families who choose circumcision for their infants. But the new report is unlikely to silence critics of the practice, who have called it “insane” and a “disservice to American parents and children.”

Here’s some context, from the study, which shows a slight increase in circumcision among older men, but a decline among newborns:

Preparing for a circumcision

Preparing for a circumcision (Cheskel Dovid/Wikimedia Commons)

“The latest data on male circumcision in the United States show a 2.5% overall increase in prevalence in males aged 14 to 59 years between 2000 and 2010. In contrast, there has been a downward trend in neonatal circumcisions, with the present analyses finding that the true extent of this decline is 6 percentage points.”

And here’s more from the news release:

Whereas circumcision rates have risen in white men to 91%, in black men to 76%, and in Hispanic men to 44%, the study authors found an alarming decrease in infants. To get the true figures they had to correct hospital discharge data for underreporting. This showed that circumcision had declined from a high of 83% in the 1960s to 77% today.

There seemed to be two major reasons for the fall.

One is a result of demographic changes, with the rise in the Hispanic population. Hispanic families tend to be less familiar with the custom, making them less likely to circumcise their baby boys.

The other is the current absence of Medicaid coverage for the poor in 18 US states. In those states circumcision is 24% lower. Continue reading

Why To Exercise Today: A Longer Life, Even If You’ve Got Health Issues

Exercise is my religion: in my family we use it for mental health, good sleep, clearer minds, calmer moods and bursts of joy. It inevitably gives us a boost, even when we’re not feeling so hot.

And, according to a new study, exercise offers the ultimate health benefit, even to people who aren’t particularly healthy and suffer from elevated blood pressure and cholesterol levels or oversized waist lines. What’s the benefit? A longer life.

frodrig/flickr

frodrig/flickr

From the study, published in PLoS One:

The promotion of increased physical activity is clearly a powerful vehicle for prevention of cardiovascular disease and premature mortality. Every adult without major disease should benefit from increased physical activity, with the greatest health benefits associated with high levels of exertion. Our study confirms the independent role of recreational physical activity in predicting and reducing cardiovascular deaths, even after the common association with conventional risk factors and obesity has been accounted for. These findings support public health endeavor to promote exercise over and above the treatment of conventional risk factors.

From Gretchen Reynolds’ Times report:

More surprising, when the researchers controlled for each volunteer’s Framingham risk score and waist size, they found that exercising still significantly reduced people’s risk of dying from heart disease. The benefits were fainter, amounting to about half as much risk reduction as before adjustment for these health factors. But they accrued even among volunteers who had less-than-ideal blood pressure, cholesterol levels or waistlines. Someone with a high Framingham score who exercised had less risk of dying than someone with a similar score who did not.

The study’s results do not suggest, of course, that any of us should now willfully ignore cholesterol or other standard risk factors when considering heart health, said Satvinder Dhaliwal, a professor at Curtin University, who with Timothy Welborn and Peter Howat, conducted the study. But the data does suggest that “identifying and increasing physical activity” may be “at least as important as the measurement and treatment of lipids and hypertension,” he said.

Obesity: A Disease By Any Other Name

(Photo: Yale Rudd Center for Food Policy and Obesity)

(Photo: Yale Rudd Center for Food Policy and Obesity)

By Melinda J. Watman
Guest contributor

When the American Medical Association declared obesity a disease last year, most of us — advocates who work to help those with obesity — were thrilled.

We saw the new definition’s potential to change how medical professionals regard people with obesity, increase society’s focus on obesity, push insurance companies to cover obesity treatments, reduce social stigma and moderate the anxiety and depression often afflicting those with obesity.

Already, we see some of those hopes being realized. Just last week, the federal government’s Office of Personnel Management issued a ruling that health insurers who cover federal employees may no longer exclude coverage of weight loss drugs on the basis that obesity is a “lifestyle” condition or that obesity treatment is “cosmetic.” This is one more significant step in the recognition and treatment of obesity as a disease.

But nothing is that simple or easy.

The high-fiving was barely over when the first study came out saying “not so fast.” It would seem, according to an article published in the New York Times, no good deed goes unpunished. The article presented a summary of a research paper titled “‘Obesity Is a Disease’: Examining the Self-Regulatory Impact of this Public-Health Message.

Melinda Joy Watman (Courtesy)

Melinda Joy Watman (Courtesy)

The three authors concluded that labeling obesity a disease led their subjects to want to eat more, eat worse and care less about their weight. They suggested that labeling obesity a disease leads to the belief that it is futile to try to manage one’s weight.

Whether one agrees with the study’s findings and conclusions or not, the underlying question of whether obesity should be accepted as a disease is the critical point. The authors certainly question its validity based on the findings that their subjects suffered an “undermining of beneficial self-regulatory processes.”

What is interesting is that if it were any other chronic illness with comparable results, we would not be questioning whether the illness should be classified as a disease. Rather, we would be trying to find better ways to engage, educate, support and treat those patients as we continued to work on new therapeutics to manage the disease.

As is often the case with obesity, it would appear this line of thinking and research has the potential to further marginalize the problem and those affected by it. This is completely counter to what the AMA policy strives for – the same medically accepted framework to diagnose, treat and support patients as exists with any other chronic illness. Continue reading

Mammogram? 50 Years Of Data And Decision Aids To Help You Think Through

A mammogram image, with arrow in upper left pointing to cancer

A mammogram image, with arrow in upper left pointing to cancer

Any procedure that involves sandwiching your naked breast between hard glass plates is personal. Very. But it’s becoming ever more clear that getting a mammogram also holds an element of personal decision. Medical authorities put out broad guidelines, but then you and your doctor can customize them, based in part on your own breast cancer risk and preferences.

How? Before we get into that, a paper just out in the Journal of the American Medical Association takes a sweeping look at a half century of mammogram data, and offers this big picture: mammograms do save lives, “but those benefits are not enormous,” said Dr. Nancy Keating of Brigham and Women’s Hospital and Harvard Medical School, the paper’s co-author. While the potential harms — that a woman will undergo cancer treatment for a tumor that never would have actually harmed her — have tended to be underestimated.

Here, Dr. Keating lays out the mammogram numbers that I found most helpful:

“If we take 10,000 women who are at average risk at age 40, over the course of ten years about 190 will be diagnosed with breast cancer. Most of these women will do well and would have done well regardless of screening. About five of those 10,000 women will have their life saved by the mammogram. Another 30 of those women will die regardless of the mammogram because unforutunately some breast cancers are so aggressive that they’re destined to be deadly despite the mammogram.

So there is benefit, five out of 10,000 women have their lives saved, but there are also these harms. One harm is false positives and unnecessary biopsies,: Of 10,000 women, about 6,000 will have at least one false positive. At this point, I say to patients, ‘You should expect that you’ll have some false positives, and don’t worry when they call you back.’ The over-diagnosis harm, we estimate: about 36 of those 190 cancers that were diagnosed could be over-diagnosed, and so those women will be treated — because we can’t currently tell the difference between the cancers we need to worry about and those that might not be so concerning, so we treat them all the same. So those women are then subjected to the harms of treatment without gaining any benefits.

So how to customize? How do you help create your own risk-benefit analysis? I asked the Informed Medical Decisions Foundation for helpful tools, and they suggested three:

The National Cancer Institute’s Breast Cancer Risk Assessment Tool

Public Health Agency of Canada Mammography Decision Aid

Healthwise

And for a bit more background, Dr. Keating discussed mammogram issues with co-host Anthony Brooks on Radio Boston, including these highlights:

On the questions Dr. Keating sought to answer in her review: Continue reading

Study: In ‘Healthy’ Fast Food Ads, Kids Mostly Just See French Fries

Just watch the video here and you’ll immediately get the gist of this study. To sum up: when fast food companies try to advertise to children their “healthier” dining options, (like apple slices) the kids, for the most part, don’t see beyond the fries.

The takeaway, according to researchers at Dartmouth, is that these ads from fast food giants like McDonald’s and Burger King “don’t send the right message.”

Here’s more from the Dartmouth news release:

In research published March 31, 2014 in JAMA Pediatrics, Dartmouth researchers found that one-half to one-third of children did not identify milk when shown McDonald’s and Burger King children’s advertising images depicting that product. Sliced apples in Burger King’s ads were identified as apples by only 10 percent of young viewers; instead most reported they were french fries.

Other children admitted being confused by the depiction, as with one child who pointed to the product and said, “And I see some…are those apples slices?”

The researcher replied, “I can’t tell you…you just have to say what you think they are.”

“I think they’re french fries,” the child responded. Continue reading

Project Louise: The One Thing That Will Actually Make Me Exercise

Who could look into a child's eyes and break a promise? (Joe Lencioni/shiftingpixel.com via Flickr)

Who could look into a child’s eyes and break a promise? (Joe Lencioni/shiftingpixel.com via Flickr)

By Louise Kennedy
Guest contributor

It’s hard to believe that I’ve been doing Project Louise for three months – one-quarter of this yearlong effort. In some ways it already feels like a year since I vowed to change my eating and exercise habits; in others I feel like a rank beginner.

Here’s where it seems as if I’ve barely begun: creating a real, practical, sustainable exercise routine. As coach Allison Rimm wrote last week, I jumped in with both feet to starting the project, and I’m now starting to realize that this habit of quick, impulsive beginnings has been one of my lifelong obstacles to creating lasting change.

Not just in exercise but in many areas of my life, I tend to dive right in with huge enthusiasm, tackle a project with great energy and excitement, and then … well, once the novelty wears off, I’m more likely to go looking for a new challenge than to focus on completing the one I’ve got.

So, as you may have noticed, already this year I’ve been gung-ho about swimming, and then power yoga, and then biking … and I haven’t even bothered to write about my other passing (and purely in-the-abstract) infatuations with everything from karate to Zumba to bellydancing as the real way to get in shape.

But this week I seem to have found the one thing that will actually make me exercise: I promised my kid that I would. And, because I vowed when I first looked into his trusting baby eyes, 16 years ago, that I would never, ever break a promise to him, I did it. Continue reading