Published by
Stanford Medicine

Author

Chronic Disease, Genetics, Health Disparities, Pediatrics, Research, Stanford News

Cystic fibrosis is deadlier for Hispanic patients, Stanford study finds

Cystic fibrosis is deadlier for Hispanic patients, Stanford study finds

Lungs-embroideryHow do physician-scientists select research projects? Sometimes, they’re prompted by the niggling feeling that something is not right.

That’s what happened to cystic fibrosis doctor MyMy Buu, MD, the lead author on a new paper that uncovers an important health disparity, a higher mortality rate for CF patients of Hispanic ethnicity. Buu, a pediatric pulmonologist who takes care of CF kids at Lucile Packard Children’s Hospital Stanford, launched the research because she noticed something worrying: It seemed to her that a lot of Hispanic children with CF were not doing well.

“…I didn’t know if this was just because we have more Hispanic patients in California, or if they were actually, really, sicker,” Buu said. CF is a genetic disease that causes serious breathing and digestive problems; Buu’s job is a mixture of trying to help her patients stay relatively healthy and dealing with complications of the disease.

“Because I’m interested in health disparities, I wanted to see if there were any differences in outcomes in the Hispanic group,” she said.

She turned to the Cystic Fibrosis Foundation‘s patient registry, focusing on 20 years of data that encompass every California child diagnosed with CF from the beginning of 1991 to the end of 2010. Of the children studied, Hispanic CF patients were almost three times as likely to die as their non-Hispanic counterparts.

Buu and her colleagues were able to use the data to eliminate several possible explanations for the disparity. Hispanic children were not being diagnosed later than non-Hispanic kids and did not have less access to health care, for instance. Our press release about the study describes the factors that may contribute to the disparity:

However, the researchers did find important clinical and social differences between the groups. At age 6, the earliest that lung function is routinely and reliably measured for patients with CF, Hispanic children with CF had worse lung function than non-Hispanic kids with the disease. The gap in lung function persisted as the children aged, although it did not widen. And although the same proportion of patients in both groups eventually developed CF complications, the complications struck Hispanic patients earlier in life. Hispanic patients lived in poorer neighborhoods and were more likely to be covered by public health insurance than their non-Hispanic counterparts.

The research also showed that, between the two groups, different mutations prevailed in the disease-causing gene, which is called the CF transmembrane conductance regulator gene. Hispanic patients tended to have rare and poorly characterized mutations in their CFTR gene, whereas non-Hispanic patients had more common mutations that have been more extensively researched.

The next steps, Buu said, are to make others aware of the increased risk for Hispanic CF patients and to figure out how the risk can be reduced.

Previously: Cystic fibrosis patient on her 20+ years of care, New Stanford-developed sweat test may aid in development of cystic fibrosis treatments and Film about twin sisters’ double lung transplants and battle against cystic fibrosis available online
Image by Hey Paul Studios

Addiction, Parenting, Pediatrics, Public Health, Research, Stanford News

Teens confused about harms of marijuana and e-cigarettes, Stanford study finds

Teens confused about harms of marijuana and e-cigarettes, Stanford study finds

smoking-skaterToday’s teenagers are familiar with the dangers of smoking conventional cigarettes, but they’re much less sure of the risks posed by marijuana and e-cigarettes, according to a Stanford study published today in the Journal of Adolescent Health.

The researchers asked 24 high-school students in one Northern California school district about the benefits and risks they perceived from cigarettes, e-cigarettes and marijuana, and where they were getting information about each. The good news is that teens have clearly absorbed the message – from parents, teachers and public health campaigns – that cigarettes are bad for their health. And the kids surveyed saw no benefit to smoking cigarettes, suggesting that conventional cigarettes have lost the “cool” factor they once had among the young.

But there was a big gap in teens’ understanding of e-cigarettes and marijuana, as our press release about the research explains:

“Kids were really good at describing the harmful things that happen with cigarette smoking, but when we asked about other products, there was a lot of confusion,” said the study’s lead author, Maria Roditis, PhD, a postdoctoral scholar in adolescent medicine.

“We’re good at delivering messaging that cigarettes are harmful, but we need to do a better job with other products that teens may smoke,” added Bonnie Halpern-Felsher, PhD, professor of pediatrics in adolescent medicine and the study’s senior author. “We don’t want the message kids get to be ‘cigarettes are bad, so everything else might be OK.’”

Teens need to hear about the risks of marijuana, including its damaging effects on the adolescent brain; its addictive potential; and its ability to damage the lungs, which is similar to that from inhaling smoke from any form of plant matter, Halpern-Felsher said. They also need to hear about the risks of e-cigarettes, which include the addictive properties of nicotine and the fact that flavor compounds in e-cigarettes can cause obstructive lung disease.

In a story about the research on LiveScience.com, Halpern-Felsher speculated on some of the factors that may be affecting teens’ views of marijuana and e-cigarettes:

There are several possible reasons why teens may view the risks of smoking cigarettes differently than using marijuana or e-cigarettes. One reason involves advertising — although the tobacco industry can’t advertise on TV, in some print media or in any youth venue, similar restrictions don’t apply to e-cigarettes, Halpern-Felsher told Live Science.

Young people are seeing e-cigarettes in cool colors and cool flavors. They are also seeing celebrities use them, and that gives these products more exposure and makes them appealing, she said.

Previously: With e-cigarettes, tobacco isn’t the only danger, How e-cigarettes are sparking a new wave of tobacco marketing and To protect teens’ health, marijuana should not be legalized, says American Academy of Pediatrics
Photo by James Alby

Global Health, Pediatrics, Public Health, Research, Sexual Health, Stanford News

Male attitudes about sexual violence challenged by educational program in Kenya

Male attitudes about sexual violence challenged by educational program in Kenya

Your-MomentIn the slums of Nairobi, Kenya, where sexual assault is rampant, an NGO called No Means No Worldwide has made important inroads in reducing rape of girls and women. As I’ve reported previously, their empowerment program for high-school girls teaches young women that they are entitled to stop unwanted sexual advances and gives them skills to do so.

But, in a culture with persistent denigration of women, girls’ lack of empowerment is only part of the problem. Fortunately, the people at No Means No Worldwide have also been asking how to improve male attitudes and behaviors toward women.

The curriculum for these young men is centered on getting them to think about what kind of people they want to be

Today, they’re reporting success in the first study of their curriculum for adolescent boys. The set of six two-hour classes for young men in impoverished Nairobi high schools focused on getting participants to challenge prevailing ideas about of women, as a Stanford expert who worked on the study explains in our press release:

“The curriculum for these young men is centered on getting them to think about what kind of people they want to be,” said lead author Jennifer Keller, PhD, clinical associate professor of psychiatry and behavioral sciences. “It’s about really getting them invested in why they need to step up and care about violence toward women: It affects their mothers, sisters and girlfriends.”

The classes helped boys recognize the cultural normalization of violence against women, and gain skills and courage to stop it. Topics of discussion included myths about women, negative gender stereotypes, when and how to safely intervene if you see someone else acting violently toward a woman, and what constitutes consent to sexual activity:

“If you think that when you take a woman out to dinner, she owes you something, you may believe that consent is different than it actually is,” Keller said. “The instructors and young men talked about understanding what true consent is and how to get that consent.”

At the end of the classes and at follow-up nine months later, the boys and young men who participated had significantly better attitudes and beliefs about women than a control group who participated in a life-skills class. Members of the intervention group also were more likely to step in to try to stop violent behavior they saw toward women. In the future, the research team plans to test whether the program also improves young men’s behavior in their own relationships with girlfriends.

Previously: Rape prevention program in Kenya attracting media attention, funding, Working to prevent sexual assaults in Kenya and Empowerment training prevents rape of Kenyan girls
Photo of participants in the “Your Moment of Truth” program by Duthie Photography, courtesy of No Means No Worldwide

Patient Care, Pediatrics, Research, Stanford News, Technology

A new tool for tracking harm in hospitalized children

A new tool for tracking harm in hospitalized children

Medical-chartsIn the 15 years since the Institute of Medicine issued its groundbreaking report showing frequent harm caused by medical care, researchers have worked to devise efficient, reliable ways to detect harm to patients. Finding out what aspects of care most often hurt patients is a key step in reducing these harms, but voluntary reports, in which caregivers are asked to document harm they cause, only identify a small percentage of total harms.

New research published today in Pediatrics describes a better approach for tracking harm to kids in hospitals. Using the system on 600 medical charts from six U.S. children’s hospitals, the researchers found that almost 25 percent of patients included in the chart review had experienced at least one harm, and that 45 percent of these harms were probably preventable. The approach, called a “trigger tool,” was based on a similar harm-tracking method designed for hospitalized adult patients. Researchers look at each medical chart for “triggers” – events or lab measurements often associated with harm – and when they find a trigger, explore the medical chart in detail around the time of the trigger to see if harm occurred.

“This tool will allow us to better understand the epidemiology of harm in hospitalized children, as well as give us the capacity to track harms over time to determine if our interventions are making an improvement,” said senior study author Paul Sharek, MD, an associate professor of pediatrics and chief clinical patient safety officer at Lucile Packard Children’s Hospital Stanford and Stanford Children’s Health. He collaborated with scientists from several other institutions on the research.

I talked with Sharek last week about the study’s findings and implications. To start, I asked him to give me an example that would help me understand the difference between preventable and non-preventable harm. A child who receives a medication that provokes an allergic reaction has experienced a non-preventable harm if it’s the first time the child ever got the drug, and there were no clues beforehand that she had the allergy, he told me. But if the drug allergy was already known and the patient got the drug anyway and had an allergic reaction, that is a preventable harm.

The high rate of preventable harms shows that there is a lot of room to make all hospitals safer for kids, Sharek said. One surprise in the data was that nine common healthcare-acquired conditions that have been targeted by national safety efforts – including central line-associated bloodstream infections, ventilator-associated pneumonia and surgical site infections – together accounted for only 4 percent of all harms identified in this study. “If we were able to eliminate every one of these, according to these data, we’d still be left with 96 percent of the harms we identified,” Sharek said.

Continue Reading »

Ethics, In the News, Patient Care, Pediatrics

Study of outcomes for early preemies highlights complex choices for families and doctors

Study of outcomes for early preemies highlights complex choices for families and doctors

3363144800_8c4c7ee6a5_zA tiny fraction of babies born at 22 weeks of gestation survive to childhood without major impairments or disabilities, according to a study recently published in the New England Journal of Medicine. But, although some of these babies can do well, there is variation between hospitals in the rate at which they are resuscitated after birth.

As was widely reported late last week, the results add to the existing debate about providing the earliest-born preemies with intensive medical care. I talked with Henry Lee, MD, a neonatologist at Lucile Packard Children’s Hospital Stanford, to get his take on the new findings. Doctors who work with tiny preemies and their families aren’t surprised by the study’s results, Lee told me, since the generally poor outcomes for 22-week babies are consistent with other studies. But they are carefully considering what to do next.

“We already knew, to a large extent, that there is variation in how different practitioners and hospitals manage patients in this peri-viable range,” Lee said. “Some hospitals tend to be more aggressive at resuscitating and actively treating these babies, others less so.”

The study’s findings highlight that doctors may have difficulty letting parents make the choice about how to handle the birth of a very early preemie, Lee noted. “We’re supposed to be communicating with parents, and they’re supposed to be making an informed decision,” he said. The variation between hospitals suggests that’s not what is actually happening; if parents were deciding what to do, the rate of resuscitation would be more consistent across hospitals. “This data is telling us that we as medical professionals are making the decision for parents, especially at really young gestational ages,” Lee said. “It’s an area that we need to continue to learn to deal with better.” Hospitals also vary in their capacity to care for such babies, he added.

Physicians from several Bay Area hospitals have already begun meeting to discuss their approaches to the earliest-born preemies, he told me. “We might not practice exactly the same, but we want to understand the rationale for what everyone is doing,” Lee said. “If one group is doing something that makes sense, we could learn from them.”

And the study also brings into focus the difficulty of balancing statistics against an individual family’s situation, Lee added. “These larger population studies help us to counsel families, but one thing I always have to say to them is that there’s uncertainty,” he said. “I tell parents that we don’t know what is going to happen to their baby – ultimately their baby is an individual and we don’t know yet. There is that very huge uncertainty.”

Previously: Counseling parents of the earliest-born preemies: A mom and two physicians talk about the challenges, Stanford-led study suggests changes to brain scanning guidelines for preemies and Talk to her (or him): Study shows adult talk to preemies aids development
Photo by Sarah Hopkins

Cardiovascular Medicine, Pediatrics, Stanford News, Transplants

Ventricular assist device helps teen graduate from high school

Ventricular assist device helps teen graduate from high school

TJ Balliao verticalWhen 17-year-old TJ Balliao was diagnosed with heart failure earlier this year, his doctors at Lucile Packard Children’s Hospital Stanford told him that he needed to receive a ventricular assist device right away. TJ was experiencing bouts of unstable heart rhythm so serious that medication alone wasn’t enough to keep him alive. The VAD, a pump implanted in his heart to help it move blood through his body, could help him survive long enough to receive a heart transplant.

But something unexpected happened after the surgery to implant TJ’s ventricular assist device. He made a strong recovery – so strong that his cardiologist, David Rosenthal, MD, offered him the opportunity to go home with his VAD, graduate from high school with his class this June, and delay a heart transplant indefinitely.

In a recent story I wrote about TJ’s case, Rosenthal explained how this could benefit TJ not just now, but also in the long run:

“It’s possible that using a VAD to intentionally delay a heart transplant could add to the patient’s total lifespan,” said Rosenthal, who directs the hospital’s pediatric heart failure and transplantation program and is professor of pediatrics at the Stanford University School of Medicine. “Survival after transplant is not as long as the natural lifespan, especially for children.”

The benefits of a VAD are many. It helps patients maintain strength while waiting for a new heart; otherwise, heart failure weakens the body, making recovery from eventual transplant more difficult. When a child is stabilized by use of a VAD, the medical team can be more selective about choosing a donor heart that is an excellent match for the recipient, too. “Plus,” said Rosenthal, “there is some likelihood that a small proportion of patients’ hearts will be able to recover and those children will avoid transplant completely.”

TJ and his medical team aren’t sure if or when he will ultimately move toward getting a heart transplant. But he’s been accepted to San Jose State University to study civil engineering, so he may be in class in the fall with his VAD battery pack at his side.

Previously: Packard Children’s heart transplant family featured tonight on Dateline, Liberated from LVAD support: One patient’s story and Pediatric social worker discusses the emotional side of heart transplants
Photo courtesy of Lucile Packard Children’s Hospital Stanford

Cancer, Pediatrics, Research, Stanford News

Existing drug shows early promise against deadly childhood brain tumor

Existing drug shows early promise against deadly childhood brain tumor

BrainModelAn existing drug may help treat the deadliest form of childhood brain cancer, according to a Stanford-led study published today in Nature Medicine. The findings are the first to show an effect of any FDA-approved drug on the cancer, which is called diffuse intrinsic pontine glioma (DIPG).

The drug, a blood-cancer medication called panobinostat, reduced tumor cell growth in a lab dish and lengthened survival time for mice with the tumor. Stanford’s Michelle Monje, MD, PhD, who led the research, cautioned that panobinostat has not yet been shown to work in children with DIPG. Her team is planning for a closely monitored clinical trial that will track the drug’s effects in DIPG patients.

From our press release about the new study:

The drug repairs a portion of the cellular machinery now known to be defective in DIPG tumor cells, the new research showed. “A key thing that is wrong with DIPG cancer cells gets corrected by panobinostat,” said Monje, who also treats DIPG patients in her role as a pediatric neuro-oncologist at Lucile Packard Children’s Hospital Stanford. However, the new data also showed that some DIPG cells develop resistance to the drug, which means it will likely need to be combined with other drugs to achieve the best results in humans. “I don’t think this is a cure, but I do think it will help,” she said.

The new panobinostat findings are one piece of a larger story about Monje’s efforts to understand DIPG. As we recently reported on Scope, her team has also found that nerve activity — in her study, the nerve firing needed to initiate walking — drives the growth of high-grade gliomas, including DIPG. In that work, the scientists uncovered a piece of the tumor’s molecular workings, called neuroligin-3, that could serve as a target for new drugs.

Neuroligin-3 is distinct from the cellular machinery affected by panobinostat. Ultimately, that’s a good thing, since doctors want to be able to attack the tumor in several ways, with more than one drug. (As an analogy, think of stopping a runaway train: It’ll be easier if you can apply the brakes and cut off the fuel supply.)

In addition to running clinical trials and continuing to study the basic molecular machinery of the tumor, the team plans to use DIPG cells in the lab to screen other drugs in combination with panobinostat. They are also collaborating with many other teams from around the world to try to make a difference in the outcome of this brain tumor, which currently has a five-year survival rate of only about one percent. The federal government’s clinical trials website lists all the trials underway on this tumor, for those who are interested.

“The goal is multimodal treatment to improve outcomes for children with DIPG,” Monje said.

Previously: Brain tumor growth driven by neuronal activity, Stanford-led study finds, Stanford brain tumor research featured on “Bay Area Proud” and New Stanford trial targets rare brain tumor
Photo by GreenFlames09

AHCJ15, Ethics, Events, Patient Care, Pediatrics, Pregnancy

Counseling parents of the earliest-born preemies: A mom and two physicians talk about the challenges

Counseling parents of the earliest-born preemies: A mom and two physicians talk about the challenges

preemie toesWhen Juniper French was born in April 2011, her mom had been pregnant for 23 weeks and 6 days – a little more than half of a typical 40-week pregnancy. Shortly before her birth, doctors had to try to explain the possible consequences of her very early arrival to her parents.

“Prematurity is a very unusual condition because it can affect any corner of the body or the mind to any degree,” Kelley Benham French, Juniper’s mother, told a group of journalists at the Association of Health Care Journalism 2015 conference this past weekend. French and her husband were informed that, even with intense medical intervention at birth, their daughter had an 80 percent chance of death or morbidity. Not only was that staggering, but their doctors couldn’t be very specific about what this number might mean if Juniper did survive: “We asked, ‘Do you mean life on a ventilator or asthma? Do you mean blindness or a wheelchair?'” French recalled. “They said, ‘We don’t know.'”

These same uncertainties are faced by all parents of babies born near the edge of viability, between 22 and 25 weeks of gestation. French, a reporter, eventually wrote an award-winning series about Juniper for the Tampa Bay Times that explains the swirl of emotions and statistics she and her husband, Tom, had to navigate in deciding to ask their doctors to resuscitate Juniper at birth. As French told the conference attendees, the choice was excruciating; they desperately wanted to be parents but didn’t want their baby to suffer. They wondered if “it might be less selfish to just let her die.”

Two Stanford experts joined French in Friday’s presentation to discuss difficult conversations about very early preemies.

Neonatologist Henry Lee, MD, gave a sampling of the information he must present to parents when he has these conversations as part of his work at Lucile Packard Children’s Hospital Stanford: Not only are these babies at risk of dying, they face daunting early-life medical complications. Lee rattled off a list: retinopathy of prematurity; necrotizing enterocolitis; bronchopulmonary dysplasia; intraventricular hemorrhage. Referring to the last item on this list, he said “You can imagine, talking to a parent, telling them that ‘Your baby is at risk for having bleeding into their brain’ can cause a lot of anxiety. And often this is the patient’s first time meeting this doctor or nurse. They don’t have any relationship, but they’re talking about these weighty matters.”

Stanford obstetrician Amen Ness, MD, added that women in preterm labor are often asked to make critical medical decisions quickly. Do they want steroids to mature the baby’s lungs? Are they OK with receiving a classical c-section to deliver the baby, which produces a large vertical scar that increases the risk of placenta accreta in future pregnancies? How much fetal monitoring do they want?

Most of these decisions would feel more comfortable if the patient had a few days to think things over and could return for later conversations with more questions. “You really need that time but you don’t always have it,” Ness said.

Continue Reading »

Ophthalmology, Pediatrics, Research, Stanford News

Eye injuries in children from non-powder guns on the rise, new study says

Eye injuries in children from non-powder guns on the rise, new study says

paintball-2Eye injuries from BB guns, pellet guns and other non-powder firearms have become more common in recent years in U.S. kids, according to a paper published this month by the Journal of the American Association for Pediatric Ophthalmology and Strabismus. 

The study, led by Stanford ophthalmologist Douglas Fredrick, MD, looked at eye injuries from recreational activities that were severe enough to send children to emergency departments between 2002 and 2012. (Fredrick has seen his share of pediatric eye injuries in his work treating kids at Lucile Packard Children’s Hospital Stanford.)

Non-powder guns caused more eye injuries than all other causes put together, including fireworks and such sports as baseball, tennis and hockey. Many of the injuries caused permanent damage to children’s eyesight, though the proportion of kids who had their vision damaged depended on the type of gun that injured them.

The paper found that since 2006, eye injuries from paintball guns, a type of non-powder gun, have dropped off. Face masks worn for paintball are very effective at preventing eye injuries, as the photo above illustrates.

But this good news was offset by increased eye injuries from air guns, which include BB guns, pellet guns and “airsoft” guns that fire lightweight plastic bullets. From a press release issued by the journal:

“These results demonstrate that air guns can cause severe, yet preventable, eye injury among the pediatric population,” explained [Fredrick]. “To reduce rates of pediatric eye injury, both practitioners and air gun companies should promote and lobby for eye safety mandates among all air gun users. Furthermore, changes in state policy to regulate possession and usage of air guns among minors may be warranted to reduce rates of accidental injury.”

Previously: Instagram for eyes: Stanford ophthalmologists develop low-cost device to ease image sharing, Study: ER statistics could be used to reduce gun violence and New retinal implant could restore sight
Photo by Victoria Padevit Brown

Infectious Disease, Patient Care, Pediatrics, Research, Stanford News

Antibiotic use in California neonatal intensive care units varies widely, study finds

Antibiotic use in California neonatal intensive care units varies widely, study finds

baby in NICUCalifornia neonatal intensive care units have huge differences in their rates of antibiotic use, a new study has found. And when it comes to antibiotics for hospitalized babies, more is not better: The study found no connection between a NICU’s rate of antibiotic use and several measures of how its young patients fared.

The research, spearheaded by the California Perinatal Quality Care Collaborative and published last last week in Pediatrics, analyzed data from 52,061 infants in 127 California NICUs. Rates of antibiotic use varied 40-fold across the NICUs studied, as news reports about the research have explained. The study looked for correlations between antibiotic use and each NICU’s rate of proven infection, rate of a serious complication of prematurity called necrotizing enterocolitis, average length of hospital stay, surgical volume and rate of patient deaths. No links were found.

“Variation in antibiotic prescribing practice appears to hinge on variation in how practitioners frame, interpret and respond to clinical situations ultimately considered unproven infection,” said lead author Joseph Schulman, MD, of the California Department of Health Care Services, in an email about the research. “There are tradeoffs between benefits and harms when treating suspected but unproven infection.”

Overuse of antibiotics presents real risks for babies, according to an accompanying editorial (.pdf) in Pediatrics. In addition to the potential for development of antibiotic-resistant pathogens, new research on the human microbiome raises the possibility that antibiotics may alter colonization of the body with healthy bacteria, the editorial says, possibly increasing the risk of necrotizing enterocolitis and of childhood obesity.

Yet there’s also no question that, for many babies, antibiotics are lifesaving. Researchers and clinicians now face the tricky task of figuring out when antibiotics can safely be reduced.

“More research is needed, but there are important things we can do right now,” senior author and Stanford neonatologist Jeffrey Gould, MD, told me. For instance, preterm babies whose mothers have signs of chorioamnionitis (an infection of the membranes around the baby) “are solid candidates for antibiotic prescriptions, but should be promptly taken off of antibiotics when cultures are negative and they have no symptoms,” he said.

As the editorial concludes, “there is great potential to substantially reduce both risk and cost for this vulnerable population through more judicious use of antibiotics.”

Previously: Study finds gap in referring California’s tiniest babies to follow-up care, Stanford-led study suggests changes to brain-scanning guidelines for preemies and Helping families navigate the NICU
Photo, which originally appeared in Stanford Medicine News, courtesy of Lucile Packard Children’s Hospital Stanford

Stanford Medicine Resources: