Published by
Stanford Medicine

Author

Mental Health, Nutrition, Pediatrics

Incorporating the family in helping teens overcome eating disorders

Incorporating the family in helping teens overcome eating disorders

Apple on plateLearning that your teen has an eating disorder is baffling and deeply troubling news for parents. Our instincts are to protect and try to help our children out of the morass, but for decades, families were kept out of the treatment loop for teens with conditions like anorexia and bulimia.

The team at the Comprehensive Eating Disorders Program at Lucile Packard Children’s Hospital Stanford, led by psychiatrist James Lock, MD, PhD, is integrating the family into helping teens overcome their eating disorders. Lock recently sat down with the Stanford Medicine Newsletter for an informative Q&A about teen eating disorders.  He spoke about the historic reasoning for cutting parents out of treatment plans:

For most of the early 20th century, parents were erroneously blamed for mental illnesses in their offspring: So-called refrigerator mothers (those lacking warmth) caused autism, and overcontrolling parents caused anorexia nervosa, experts claimed. These ideas about causation are without foundation.

Research at Stanford and elsewhere has shown that parents can play a big role in helping their teens recover from eating disorders. For example, we have demonstrated that a specific family-based therapy is twice as effective as individual psychotherapy for treating anorexia nervosa.

And what to watch for in teens:

Warning signs include changes in eating patterns, skipping meals, increased driven exercise or discussion about weight, avoidance of desirable but calorically dense foods, refusing to eat with the family, vomiting, large amounts of food missing from the refrigerator and increased irritability and emotionality. If a parent sees these signs, it would be a good idea to make an appointment for an evaluation and consultation.

The full Q&A is worth a read.

Previously: Families can help their teens recover from anorexia, new study showsA growing consensus for revamping anorexia nervosa treatmentPossible predictors of longer-term recovery from eating disordersWhat a teenager wishes her parents knew about eating disorders and Research links bulimia to disordered impulse control
Photo by daniellehelm

Mental Health, Parenting, Pregnancy, Women's Health

A telephone lifeline for moms with postpartum depression

A telephone lifeline for moms with postpartum depression

Van_Gogh_-_Madame_Augustine_Roulin_mit_BabyI’m currently pregnant and due in less than two weeks. It’s my second child, so I’m not as worried about caring for a newborn as I was the first time around. But one nagging worry I have is the risk of postpartum depression, sometimes called postnatal depression. I have a family history of depression and that puts me at higher risk. Luckily, it wasn’t a problem with my firstborn, but it can crop up in later pregnancies – and scientists don’t entirely understand the reasons for it.

Postpartum depression usually hits four to six weeks after delivery—though it can show up months later. It’s characterized by feeling overwhelmed, trapped, guilty or inadequate, along with crying, irritability, problems concentrating, loss of appetite or libido, or sleep problems. An estimated 9 to 16 percent of new mothers are affected by postpartum depression. Even men are known to suffer from it sometimes. PPD affects not just the mother (or father), but can have lasting effects on the child as well, so helping these parents through a difficult and isolating time is critical

Now, a study published in Journal of Advanced Nursing shows that providing a social network for new moms, via phone calls from other mothers who had recovered from PPD, could alleviate symptoms for moms in the study for up to two years after delivery. A news release summarized the findings:

For the present quasi-experimental study, researchers recruited 64 mothers with depression up to two years after delivery who were living in New Brunswick. Peer volunteers who recovered from postnatal depression were trained as peer support and provided an average of nine support calls. The average age of mothers was 26 years, with 77% reporting depressive symptoms prior to pregnancy and 57% having pregnancy complications. There were 16 women (35%) who were taking medication for depression since the birth.

I find the idea that this insidious problem could be tackled with a phone version of the ubiquitous and valuable moms’ groups an uplifting one. Compared to drug treatments, regular phone calls from a peer who’s gone through something similar is a relatively cheap treatment. Further studies are needed, but I’ll be watching to see whether this approach takes hold as a standard intervention for PPD.

Previously: “2020 Mom Project” promotes awareness of perinatal mood disorders,  Is postpartum depression more of an urban problem?, Helping moms emerge from the darkness of postpartum depression, Breastfeeding difficulties may lead to depression in new moms, and Dads get postpartum depression, too
Image by Van Gogh

Chronic Disease, Health Policy, Public Health, Public Safety, Stanford News

New uses for old polymers: Stanford Engineering team uses surgical glove material to make air filters

New uses for old polymers: Stanford Engineering team uses surgical glove material to make air filters

After visiting China and enduring the stifling air pollution, Stanford engineering professor Yi Cui, PhD, wanted to explore solutions to the problem. This week, his team published a paper in the scientific journal Nature Communications, detailing a new kind of highly effective air filter made out of polyacrylonitrile, a synthetic polymer that is used to make surgical gloves.

The researchers used a relatively new technique called electrospinning, or drawing out microscopically thin threads from a liquid to make a lightweight and fairly transparent filter out of PAN. The filter attracts particles from the air, especially those around 2.5 microns – or PM2.5 – which are among the most dangerous for the human respiratory tract.

The researchers make the case for the new PAN air filter pretty eloquently in a press release:

“It was mostly by luck, but we found that PAN had the characteristics we were looking for, and it is breathtakingly strong,” said Po-Chun Hsu, co-author on the study and a graduate student in Cui’s lab.

. . .

“The fiber just keeps accumulating particles, and can collect 10 times its own weight,” said Chong Liu, lead author on the paper and a graduate student in Cui’s lab. “The lifespan of its effectiveness depends on application, but in its current form, our tests suggest it collects particles for probably a week.”

The material collects 99 percent of air particles for up to a week, but is still 70 percent transparent, so it could be used as a window covering. “It might be the first time in years that people in Beijing can open their window and let in a fresh breeze,” Cui said in the statement.

Previously: The high cost of pollution on kids’ healthStudy shows air pollution may increase heart attack risk more than drug useContinuing pollution restrictions used during Beijing Olympics could reduce cancer rates and New insight into asthma-air pollution link
Video by Kurt Hickman

Big data, Genetics, Global Health, Infectious Disease, Research, Science

The benefit of mathematical models in medicine

The benefit of mathematical models in medicine

1024px-Free_range_chicken_flockTheoretical modeling sounds like it has, at best, a distant connection to the day-to-day concerns of medical professionals who care for or research the needs of patients. But when I spoke recently with Noah Rosenberg, PhD, a population geneticist at Stanford and editor of the scientific journal Theoretical Population Biology, he pointed out that modeling can offer distinct benefits to those in medical fields like epidemiology and genetics.

“We see a lot of occasions in public discussions of areas like the spread of epidemics, the demography of aging populations, and big data analysis in genomics where part of the backdrop arises from theoretical population biology work,” Rosenberg said. “We hope to spread the word that there is a place for the kinds of theoretical and mathematical insights that can contribute to those important topics.”

Rosenberg noted that papers in the journal often span the divide between mathematics and biology, but they have a few things in common. In an editorial he published last month in the journal, Rosenberg describes an ideal study for the journal – namely that first, “the mathematical work is motivated by a genuine problem in biology, and there’s a need for theory to resolve the problem,” he said. Secondly, the mathematical work is substantial enough that it uncovers new potential relationships or new explanations for a phenomenon, and lastly, that the advances contribute to our understanding of biology – though some of the best papers in the field can also have a big impact on the field of mathematics, too.

When I asked him to talk about what that would mean for studies that touch on health research, he pointed me to a couple of fascinating papers. One is a paper by Shai Carmi, PhD, and colleagues that explains a new way to look at shared DNA strands between people in order to understand their relatedness and the amount of overlap in their genomes. This has implications for how we think about “the way in which genes descend within families, including genes that may be related to a disease.” It’s one of the journal’s most downloaded papers, Rosenberg told me.

The second is a study by Maciej Boni, PhD, and colleagues that incorporates how decisions that poultry farmers in Southeast Asia make about market conditions might affect the spread of avian influenza in their flocks. When avian flu is identified in a region, poultry flocks are usually culled. It’s an interesting example of how human behavior can affect disease dynamics.

Rosenberg noted that the studies and models that are able to incorporate human behavioral patterns are among the most interesting that he sees. Nailing down how people’s decisions affect the course of an outbreak is notoriously difficult, but like the avian influenza paper demonstrates, mathematical models make it possible to explore the consequences of different assumptions about these decisions.

Rosenberg says that it’s even possible to make mathematical models of cultural practices (like deciding not to immunize your children) and how they spread among groups of people. One public laboratory this interaction is currently playing out in is the measles outbreak that got its start at Disneyland in December. The outbreak topped 100 cases nationwide, mostly among families that refuse to vaccinate their children. “It’s the intersection between human behavior and dynamics of disease,” he said. “Putting those together in a mathematical model to predict what might happen is the kind of work that appears in Theoretical Population Biology.”

Previously: Stanford physician Sanjay Basu on using data to prevent chronic disease in the developing world and Facebook app models how viruses spread through human interaction
Photo by Woodley Wonderworks

Chronic Disease, Health Policy, In the News, Pediatrics, Public Health, Sleep

Talking about teens’ “great sleep recession”

Talking about teens' "great sleep recession"

Sleepy Teen Student

We all understand, at some level, that sleep is critical to our health. But there’s a cultural undercurrent that belies that understanding: We tend to glorify the go-getters who can survive on four or five hours of sleep, lauding their productivity and drive. Numerous studies have shown that Americans of all ages – kids, teens, and adults – are not getting enough sleep.

More and more, researchers are warning that lack of sleep can damage our long-term health. Just yesterday, Rafael Pelayo, MD, with the Stanford Center for Sleep Sciences and Medicine, was on KQED’s Forum radio program to discuss a new study looking at some alarming trends in teen sleep habits. The study, titled “The Great Sleep Recession” was published this week in the scientific journal Pediatrics. It showed that over the past 20 years, teens have been getting less sleep. Girls, minority teens, teens in urban areas and of low socioeconomic status were less likely to get at least seven hours of sleep than male, white teens. What’s more, minority teens and low SES teens were likely to report they thought they got enough sleep.

During the show, Pelayo spoke about our relationship with sleep and the challenges of sticking to a “sleep budget”:

When I read the title [of the study] it made me think of Bill Dement, who talks – at Stanford – about a sleep debt and not having enough total sleep. And a sleep debt has been growing and accumulating in people who have used sleep as something as optional in their lives. These students are… modeling after their parents, who are not getting enough sleep… But in the kids, it’s a particularly hard problem for them, they feel pressure to not get enough sleep.

Pelayo went on to say that parents and teens tend to prioritize other things, like homework, over sleep – but what they should be doing is setting aside a certain amount of time for sleep. “If the homework doesn’t get done, it doesn’t get done. They can’t make homework more important than sleep,” he said.

That last statement is a pretty radical suggestion, but if we are to avoid the fall-out from our bad sleep habits, radical changes may be the only solution.

Previously: With school bells ringing, parents should ensure their children are doing enough sleeping, Stanford docs discuss all things sleep, Study shows poor sleep habits as a teenager can “stack the deck against you for obesity later in life” and What are the consequences of sleep deprivation?
Photo by Alberto Vacarro

otolaryngology, Patient Care, Pediatrics, Stanford News

Hearing clearly helped Down syndrome toddler develop on track

Hearing clearly helped Down syndrome toddler develop on track

joshua-copen-mom-stanford-childrens

For children who are deaf or have hearing disabilities, cochlear implants can make it possible to hear sounds. Unlike hearing aids, which simply amplify sounds, cochlear implants stimulate the auditory nerve directly. If young children get the implant and the intense follow-up therapy, they are able to “develop language skills at a rate comparable to children with normal hearing, and many succeed in mainstream classrooms,” according to the National Institutes of Health.

But for children with other developmental disabilities, that training and therapy follow-up can be even more challenging, so many doctors don’t advocate for implants for them. That was the experience of Joshua Copen, who has Down syndrome, and his mother, Iara Peng. Notably, children with Down syndrome are more likely than the rest of the population to have hearing problems.

Peng’s efforts to get Joshua a cochlear implant ran into frustrating roadblocks until she met Kay Chang, MD, a pediatric otolaryngologist and otologic surgeon at Lucile Packard Children’s Hospital Stanford. Chang described the challenges of cochlear implants for children like Joshua in a post on Packard’s Healthier, Happier Lives Blog:

“Traditionally, developmentally delayed patients haven’t been seen as ideal candidates for cochlear implants,” said Chang, associate professor of otolaryngology – Head and Neck Surgery at the Stanford University School of Medicine. “The electrical stimuli delivered by the implants have no resemblance to regular hearing. The brain has to adapt itself to learn the electrical patterns. Someone who is developmentally delayed isn’t going to progress as fast as a child who is developing normally. However, just because it’s a lot tougher to rehabilitate a child with developmental delay doesn’t mean they won’t benefit from it.”

For Joshua, an added stumbling block was getting his family’s insurance providers to cover the surgery and follow-up classes. But that issue was resolved, and now, at five years old, Joshua has had no problems with his learning comprehension.

Evidence is mounting that although more challenging to implement, cochlear implants for children like Joshua are worth the effort. John Oghalai, MD, head of the Children’s Hearing Center at Packard, is conducting a study looking into how cochlear implants help developmentally delayed children. The blog post also highlights a 2012 study by Oghalai:

Oghalai found that the use of cochlear implants in deaf children with developmental delay can help them from falling further behind their peers and shouldn’t be so easily dismissed. And the earlier the child gets the implants – 12 months is the minimum age allowed by the FDA – the better.

Previously: Cochlear implants could help developmentally delayed infants, says Stanford/Packard study and Baby steps: Therapy that helps the deaf to hear

Cancer, Chronic Disease, Clinical Trials, Science Policy

A look at crowdfunding clinical trials

A look at crowdfunding clinical trials

1024px-Assorted_United_States_coins I’ve been able to watch the crowdfunding phenomenon up close: My husband is a Kickstarter addict, and he, like millions of others, funds projects that speak to his passions and social priorities. In recent years, some non-profits have applied the crowdfunding model to clinical trials (something he hasn’t funded yet), and others may follow suit as federal-funding dollars dries up. Last week, Nature Medicine published an article that describes the first few years of those efforts and the questions they bring up.

As outlined in the piece, critics argue that the system unfairly penalizes those that may not have a large online social network to use to publicize their funding efforts, while proponents say it makes it possible for donors to connect more directly with the research and it increases transparency of research funding. As one source explains:

“One key thing is tangibility,” says Catherine Ferguson, Innovation Project Lead at Cancer Research UK, “It’s an inherent part of crowdfunding that isn’t inherent in regular funding.” Whether it’s a particular type of cancer or a particular therapy, crowdfunding allows for a “more direct relationship with both the researcher and the research,” she adds, emphasizing that this directed approach is good for maintaining relationships with donors.

Cancer Research UK, which we’ve written about before, was one of the early advocates of clinical trial crowdfunding. It recently concluded it first effort to crowdfund a clinical trial to study a vaccine for Epstein-Barr virus in cancer patients. The group fell far short of their goal, raising only six percent of the £40,000 ($61,000) goal on their Indiegogo campaign, so it returned the funds to donors. Again, from the article:

The organization chose a so-called fixed-funding model, in which they chose a goal amount but kept none of the funds that were raised if the goal wasn’t met. “It felt disingenuous to keep some of the money but not make the research happen,” said Ferguson. “We really wanted to emphasize that the money was for a specific project and if the project couldn’t be fully funded, then why keep the money?” Because the campaign wasn’t successful, the funds raised were returned to those who pledged the money, but Ferguson said that many of the donors reached out to make contributions to the organizations anyway.

Other organizations are using slightly different models, and the coming months, or maybe years, will reveal whether any are able to successfully fund clinical trials through this new avenue.

Previously: New crowdfunding sites apply Kickstarter model to health and medicineCan crowdfunding boost public support and financing for scientific research? and Crowdsourcing the identification of cancer cells
Photo by Elembis

Aging, Health Policy, Patient Care, Stanford News

A call to “improve quality and honor individual preferences at the end of life”

A call to "improve quality and honor individual preferences at the end of life"

ICU IllustrationThis week’s New England Journal of Medicine featured a perspective piece co-authored by Philip Pizzo, MD, former dean of Stanford’s School of Medicine, and David M. Walker discussing recommendations for how U.S. physicians can approach the issue of end-of-life care. Pizzo and Walker co-chaired an Institute of Medicine (IOM) committee on the issue that culminated in a report that we wrote about last September.

In a recent survey, most physician respondents said they “would forgo high-intensity end-of-life treatment” for themselves. Yet many patients in their care are subjected to aggressive treatments that prolong the dying process unnecessarily. The editorial outlines the challenges that we face as a nation regarding end-of-life care and notes that the aging population of the country will soon make end-of-life care a critical issue. The authors recommend, among other things, adding end-of-life care to physician training, incorporating end-of-life conversations into patient care, even before they become terminally ill, and incorporating end-of-life decisions into health care delivery and payment programs.

In an email, Pizzo discussed why fixing our end-of-life care predicament is so important, telling me:

Unfortunately, all too frequently, individual preferences are not honored at the end of life – with many individuals experiencing more invasive interventions than they wished at the end of their life. It is important that we value the quality of life throughout the life journey, including at the end of life. As a nation, our current health-care system fails in end of life care – which has an enormous impact on individuals, their families and loved ones, and our community and nation.

The situation is complicated by politics. In 2009, end-of-life care became a hot-button issue when critics of the Affordable Care Act claimed that a provision to reimburse physicians for advising patients on living wills or advance directives would lead to “death panels.” Pizzo said of the debate:

Having conversations with our families and physicians about the end of life that allow us to express our personal preferences should not be seen as controversial… Sadly, what has made this issue controversial is egregious political rhetoric. The suggestion that health-care reform would result in “death panels” was wrong and highly destructive, frightening many Americans unnecessarily. When such hyperbole and soundbites become the story they have highly negative consequences. That is why the IOM committee underscored the importance of a more accurate and fact based public discussion about end of life care that made it clear that our intentions, as a society, must be to improve quality and honor individual preferences at the end of life.

Previously: No one wants to talk about dying, but we all need to, Study: Doctors would choose less aggressive end-of-life care for themselves, Former School of Medicine dean named to expert panel to reform end-of-life care in America, Communicating with terminally ill patients: A physician’s perspective and On a mission to transform end-of-life care
Image, “A portrait of death in modern America,” by Neils Olson

Bioengineering, Ethics, Fertility, Genetics, In the News, Parenting, Pregnancy

And baby makes four? KQED Forum guests discuss approval of three-parent IVF in UK

And baby makes four? KQED Forum guests discuss approval of three-parent IVF in UK

newborn feet Scope BlogLast week, the U.K. House of Commons voted to legalize a controversial in vitro fertilization technique called mitochondrial donation, popularly known as the “three-parent baby” technique. The technique is intended for mothers who have an inherited genetic defect in their mitochondria – the fuel compartments that power our cells – and can help them from passing on the incurable disease that often entails years of suffering and ends in premature death.

Doctors replace the DNA from a donor egg with the mother’s DNA, use sperm from the father to fertilize it, then implant it into the mother’s uterus via IVF technology. The donor egg’s cytoplasm contains defect-free mitochondria and DNA from both parents. Proponents say the technique gives parents with mitochondrial disease the chance to have disease-free children, but critics say it brings us one step closer to the reality of genetically modified “designer babies.”

On Friday, Stanford law professor and biotechnology ethicist Hank Greely, JD, was among the guests on KQED’s Forum broadcast to discuss the issue. He’s in favor of the procedure, noting that when looking at genetic modifications, “the purpose, the nature, [and] the safety” should be considered. “There are some things that I think shouldn’t be done,” he said, adding that “things like this, which gives women who have defective mitochondrial DNA their only chance to have genetic children of their own… if the safety proves up… seems to be a good use.”

Previously:  Daddy, mommy and ? Stanford legal expert weighs in about “three parent” embryos and Extraordinary Measures: a film about metabolic disease
Photo by Sean Drelinger

Big data, Clinical Trials, FDA, NIH, Research, Science

Transparency in clinical trials: The importance of getting the whole picture

Transparency in clinical trials: The importance of getting the whole picture

New rules for clinical trials Scope blog 2015.02.02Last week, the Journal of the American Medical Association ran a Viewpoint article from Francis Collins, MD, PhD, director of the National Institutes of Health and Kathy Hudson, PhD, deputy director of NIH, about the U.S. Health and Human Services’s plans to beef up transparency of clinical trials of FDA-regulated drugs and devices.

As they write, the rate of results-sharing for clinical trials is fairly dismal. Some of the reasons for this go beyond researchers; for example, it’s extremely difficult to get negative results published in scientific journals. Collins and Hudson point out that another avenue exists for sharing summary results: NIH’s ClinicalTrials.gov website. But even there, less than one-third of researchers had shared results within four years of the end of their studies. Collins and Hudson are critical of this lapse in data sharing:

Without access to complete information about a particular scientific question, including negative or inconclusive data, duplicative studies may be initiated that unnecessarily put patients at risk or expose them to interventions that are known to be ineffective for specific uses. If multiple related studies are conducted but only positive results are reported, publication bias can distort the evidence base. Incomplete knowledge can then be incorporated into clinical guidelines and patient care. However, one of the greatest harms from nondisclosure of results may be the erosion of the trust accorded to researchers by trial participants and, when public funds are used, by taxpayers.

The new rules make the expectations to report some summary details about clinical trials, including adverse events, explicit. Although NIH has always encouraged sharing of summary results, the rules haven’t always been explicit. Now that there will be detailed guidance, the penalty for not complying will be harsher:

Thus, with the implementation of clearer requirements, augmented support materials and resources, and facilitated reporting, the NIH expects that investigators and sponsoring organizations will have the necessary tools to provide accurate, complete, and timely trial results submissions. However, for grantees who are subject to the amendments act and fail to comply after sufficient notification, the law is clear that NIH and other federal funders of clinical trials must then withhold further funding for the grant and any future grant to the grantee. In addition, the timely reporting of clinical trials will be taken into consideration during review of subsequent applications for funding.

The proposed changes to the regulations are currently in the public comment period, which will end in a few weeks, on February 19. After a review of the comments (and possible revisions), a final rule will likely be issued in a few months time. Once the rule goes into effect, it will be interesting to watch how this changes the research process for new NIH and FDA-regulated studies.

Previously: Shake up research rewards to improve accuracy, says Stanford’s John IoannidisRe-analyses of clinical trial results rare, but necessary, say Stanford researchersHow important is it to publish negative results?Researchers call for “democratization” of clinical trials data and A critical look at the difficulty of publishing “negative” results
Photo by U.S. Department of Defense

Stanford Medicine Resources: