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Patient Care, Pediatrics, Research, Technology

How virtual visits can help children in the hospital reduce stress, speed up recovery

How virtual visits can help children in the hospital reduce stress, speed up recovery

Past research has shown that patients in the hospital experience less nerve-related pain and recover more quickly when they have visitors. Now findings recently published in Pediatrics show that virtual visits are equally beneficial.

In the study, researchers at the University of California, Davis Children’s Hospital analyzed the effectiveness of Family-Link, a program that provides webcams, laptops and Internet access to pediatric patients. Researchers assessed the anxiety levels of roughly 230 children who used the teleconferencing service and 135 who did not when they were admitted to the hospital and discharged using the Parent-Guardian Stress Survey. According to a Futurity post:

Overall, children who used Family-Link felt less stressed compared to those who did not use the program. The effect was even more pronounced for children who lived closer to the hospital and had shorter hospitalizations. This group experienced a 37 percent stress reduction when using Family-Link.

“This study shows that we have another tool to help children during their hospital stays,” says Yang. “The improvement in stress scores shows that Family-Link is really helping many children and might possibly be improving outcomes.”

Previously: Using the iPad to connect ill newborns, parents

Ethics, In the News, Research, Transplants

Physicians more likely to become organ donors, Canadian study finds

Physicians more likely to become organ donors, Canadian study finds

When receiving advice from a physician, one might wonder what the doctor would choose for him- or herself. Recently we discussed here a study on doctors’ preferences for their own end-of-life care. Now, a study published in the Journal of the American Medical Association has reported on physicians’ views and behavior surrounding their own organ donation.

As a news@JAMA piece reports on the Canadian study, physicians are nearly 50 percent more likely than non-physicians to register as an organ donor. More from the piece:

Despite waiting lists for organs in many countries, the percentage of individuals registered in national organ donation registries in most countries is below 40%. The United States fares a bit better than average, with 48% of adults registered as organ donors.

Concerns about organ donation have led to lower-than-average rates of registration in Ontario, Canada, where only about 25% of adults have registered. Currently, there are more than 1500 people on transplant waiting lists in Ontario.

Study author Alvin Ho-ting Li, BHSc, a PhD candidate at Western University in Ontario, Canada, discusses the study’s purpose and findings further in a Q&A section of the piece.

Previously: More on doctors and end-of-life directivesStudy: Doctors would choose less aggressive end-of-life care for themselvesStudents launch Stanford Life Savers initiative to boost organ donation and Family ties: One sister saves another with live liver donation

Genetics, In the News, Pediatrics, Research

New Yorker story highlights NGLY1 research

New Yorker story highlights NGLY1 research

PackardGirl260x190The new issue of the New Yorker, out today, includes a fascinating medical story with a notable Stanford connection. As we’ve described before, a team of scientists from institutions around the world reported earlier this year on their discovery of a new genetic disease, NGLY1 deficiency. Stanford’s Gregory Enns, MB, ChB, was co-lead author of the paper describing the new finding, and one of his patients, Grace Wilsey, was among the small group of children in whom the disease first was identified. Grace’s inability to make tears when she cries was a key clue in unlocking the mystery of the disease.

But, as the New Yorker piece (subscription required) explains in detail, there’s much more to the story than that. In particular, it tells how the families of patients – especially Grace’s parents, Matt and Kristen Wilsey, and Matt and Cristina Might, who are the parents of index patient Bertrand Might – successfully encouraged researchers at different institutions to collaborate with each other in a way that advanced the discovery with exceptional speed. This was counter to the usual practice in science, the story explains. Typically, scientists avoid sharing data with competitors, even if doing so would advance the research:

If a team hunting for a new disease were to find a second case with the help of researchers from a competing lab, it could claim to have “solved” a new disease. But it would also have to share credit with competitors who may have done nothing more than grant access to existing data. When I asked [Duke University geneticist and NGLY1 deficiency co-discoverer Vandana] Shashi if she could imagine a scenario that would result in one research team’s publishing a paper with data from a different research group working on a similar project, she said, “Not that I can think of.”

David Goldstein [another Duke geneticist who collaborated with Shashi] added, “It’s not an overstatement to say that there are inherent conflicts of interest at work.” Daniel MacArthur, a genetics researcher at Massachusetts General Hospital, is even more blunt. “It’s an enormous deal,” he told me. “And it’s a big criticism of all of us, but it’s a criticism we all need to hear. The current academic publication system does patients an enormous disservice.”

Fortunately for patients like Grace and Bertrand, and for the doctors who want to help them, the culture is shifting. One marker of the shift is the NIH’s announcement earlier this month that it will be expanding its Undiagnosed Diseases Program to a network of seven sites across the country (including Stanford) and building in a requirement that all seven centers share data with each other.

Another is that researchers are realizing that families like the Wilseys and Mights will continue to make an impact. In fact, the Wilsey family has recently launched the Grace Wilsey Foundation to raise awareness about NGLY1 deficiency and promote investigation of possible treatments for the disease.

As Shashi puts it at the conclusion of the New Yorker story:

“Gone are the days when we could just say, ‘We’re a cloistered community of researchers, and we alone know how to do this.’”

Previously: NIH network designed to diagnose, develop possible treatments for rare, unidentified diseases and Crying without tears unlocks the mystery of a new genetic disease
Photo of Grace Wilsey courtesy of Lucile Packard Children’s Hospital Stanford

Addiction, Emergency Medicine, Public Health, Research, Technology

Text messages after ER visit could reduce young adults’ binge drinking by more than 50 percent

Text messages after ER visit could reduce young adults' binge drinking by more than 50 percent

Bar_texting_0701414Researchers have demonstrated that text message programs can, among other things, help diabetes patients better manage their condition, assist smokers in kicking their nicotine habit, and encourage expecting mothers to get flu shots.

Now new findings published in the Annals of Emergency Medicine show that text messages can also be an effective tool for reducing binge drinking among young adults whose hazardous alcohol use has resulted in an emergency room visit. During a 12-week study, 765 patients who were treated in the emergency room and screened positive for a history of hazardous drinking were divided into three groups. The first group received text messages prompting them to respond to drinking-related queries and received text messages in return offering feedback aimed at either strengthening their low-risk drinking plan or promoting reflection on their drinking plan or decision not to set a low-risk goal. Another group received only text queries about their drinking, and the remaining individuals received no text messages.

A story published today on PsychCentral reports on the researchers’ results:

The group receiving both text message queries and feedback decreased their self-reported binge drinking days by 51 percent and decreased the number of self-reported drinks per day by 31 percent.

The groups that received only text messages or no text messages increased the number of binge drinking days.

“Illicit drugs and opiates grab all the headlines, but alcohol remains the fourth leading cause of preventable death in the U.S.,” said [Brian Suffoletto, MD, assistant professor in the Department of Emergency Medicine at the University of Pittsburgh School of Medicine].

“If we can intervene in a meaningful way in the health and habits of people when they are young, we could make a real dent in that tragic statistic. Alcohol may bring them to the ER, but we can do our part to keep them from becoming repeat visitors,” [he added].

Previously: CDC explores potential of using smartphones to collect public health data, Could better alcohol screening during doctor visits reduce underage drinking?, Personality-based approach can reduce teen drinking and The costs of college binge drinking
Photo by Anders Adermark

Chronic Disease, Research, Science, Stanford News, Technology

Stanford team develops nanotech-based microchip to diagnose Type 1 diabetes

Stanford team develops nanotech-based microchip to diagnose Type 1 diabetes

Dr. Brian Feldman?s M.D. hold a computer chip that he develop that will benefit diabetic patients at the Stanford School of Medicine,  on Thursday, July 4, 2014.  ( Norbert von der Groeben/ Stanford School of Medicine )

Years ago, when patients showed up at the doctor with excessive thirst, frequent urination and unexplained weight loss – in other words, the classic symptoms of diabetes mellitus – diagnosing them was usually just a matter of checking for high blood sugar. Yes, they needed to be treated for the correct form of the disease, but the two main types were found in different populations. So, in most cases, no lab test was needed to figure out whether someone had Type 1 or Type 2 diabetes; demographic factors were enough to make the distinction.

Of late, there’s been much more cross-over between the two groups. To treat patients correctly, it’s important to diagnose the right form of diabetes, but there’s a problem: The only test that does so is expensive, cumbersome and available only in hospitals.

So it’s great news that Stanford scientists are developing a new Type 1 diabetes test, described in a paper published online this week in Nature Medicine. The new nanotechnology-based microchip, which researcher Brian Feldman, MD, PhD, holds in the photo above, tests patients’ blood for the auto-antibodies that cause Type 1 diabetes. The new test is cheap, portable, and uses much less blood than the older diagnostic test. Unlike the old test, it requires no radioactive reagents and is simple enough to use in low-tech settings.

The test uses a nanotech enhancement (specifically, nano-sized islands of gold; hence the golden glow of the chip that Feldman is holding) to help detect auto-antibodies. In addition to diagnosing new patients, this technology will also enable better research into how Type 1 diabetes develops, as our press release explains:

…[P]eople who are at risk of developing Type 1 diabetes, such patients’ close relatives, also may benefit from the test because it will allow doctors to quickly and cheaply track their auto-antibody levels before they show symptoms. Because it is so inexpensive, the test may also allow the first broad screening for diabetes auto-antibodies in the population at large.

“The auto-antibodies truly are a crystal ball,” Feldman said. “Even if you don’t have [Type 1] diabetes yet, if you have one auto-antibody linked to diabetes in your blood, you are at significant risk; with multiple auto-antibodies, it’s more than 90 percent risk.”

Feldman’s team has started a biotech company to further develop the test and is seeking FDA approval for the new method. In addition, Stanford University and the researchers have filed a patent for the new technique.

Previously: A simple blood test may unearth the earliest signs of heart transplant rejection, Stanford microbiologist’s secret sauce for disease detection and One family’s story on caring for their children with type 1 diabetes
Photo by Norbert von der Groeben

Cancer, Research, Science, Stanford News, Stem Cells

Radiation therapy may attract circulating cancer cells, according to new Stanford study

Radiation therapy may attract circulating cancer cells, according to new Stanford study

Localized radiation therapy for breast cancer kills cancer cells at the tumor site. But, in a cruel irony, Stanford radiation oncologist Edward Graves, PhD, and research associate Marta Vilalta, PhD, have found that the dying cells in the breast may send out a signal that recruits other cancer cells back to the site of the initial tumor. Their work was published today in Cell Reports. As Graves explained in an e-mail to me:

Cancer spreads by shedding tumor cells into the circulation, where they can travel to distant organs and form secondary lesions.  We’ve demonstrated with this study that cancer radiation therapy may actually attract these circulating tumor cells, or CTCs, back to the primary tumor, which may lead to the regrowth of the tumor after radiation therapy.

The researchers studied mouse and human breast cancer cells growing in a laboratory dish, as well as human breast cancer cells implanted into mice. They found that irradiated cells secreted a molecule called granulocyte macrophage colony stimulating factor, or GM-CSF. Blocking the expression of GM-CSF by the cells inhibited (but didn’t completely block) their ability to recruit other cells to the cancer site. The finding is particularly interesting, since physicians sometimes give cancer patients injections of GM-CSF to enhance the growth of infection-fighting white blood cells that can be damaged during chemotherapy. As Graves explained, “This work has important implications for clinical radiotherapy, and for the use of GM-CSF in treating neutropenia in cancer patients during therapy.”

The researchers say, however, that cancer patients shouldn’t eschew radiation therapy. Rather, the finding may help clinicians devise better ways to fight the disease – perhaps by blocking GM-CSF signaling. Graves concluded:

It should be emphasized that radiation therapy remains one of the most effective treatments for cancer. Our findings will help us to further optimize patient outcomes following this already potent therapy.

Previously: Using 3-D technology to screen for breast cancer, Blood will tell: In Stanford study, tiny bits of circulating tumor DNA betray hidden cancers and Common drug class targets breast cancer stem cells, may benefit more patients, says study

In the News, Neuroscience, Research, Stanford News

A spotlight on Stanford scientists’ use of deep-brain stimulation to eavesdrop on problem neural circuits

A spotlight on Stanford scientists' use of deep-brain stimulation to eavesdrop on problem neural circuits

Earlier this week, KTVU-TV aired a segment highlighting Stanford scientists’ ongoing research using deep-brain stimulation to control Parkinson’s patients’ tremors and record brain activity. A patient interviewed for the piece said the treatment “made a huge difference in my life” and called it “revolutionary.” More from the piece:

The new stimulator nicknamed “brain radio” is developed by Medtronic and tested by [Stanford neurologist Helen Bronte-Stewart, MD, and colleagues.]

“We can for the first time record the neural activity in the brain directly from the deep brain stimulator in somebody’s chest,” she said.

Despite decades of research, doctors have only a sketchy ideas of how the brain works, but now using Medtronic’s device they are for the first time opening a window into the human brain.

“I would think there will be developments that we don’t really know about right now that will come from some of the things we find out as we do this research,” said Bronte-Stewart.

Previously: Stanford conducts first U.S. implantation of deep-brain-stimulation device that monitors, records brain activity

Parenting, Public Health, Research, Sleep

The high price of interrupted sleep on your health

The high price of interrupted sleep on your health

dad_baby_nap_time

As the mother of a 10-month-old, I’m constantly answering the question: Is your son sleeping through the night? And, much to my dismay, I have to repeatedly answer, “No.” So I was interested, and considerably alarmed, to read about new findings showing that interrupted sleep could be as harmful to your physical health as a lack of sleep.

A Time article published today describes the study and the Tel Aviv University researchers’ results:

Students slept a full eight-hours one night followed by a night of interrupted sleep in which they received four phone calls directing them to complete a brief computer exercise before returning to bed. The morning after both nights, the volunteers completed tasks to measure their attention span and emotional state — results proved that just one night of interrupted sleep had negative effects on mood, attention span and cognitive ability.

[Lead researcher Avi Sadeh, PhD,] believes that several nights of fragmented sleep could have long-term negative consequences equivalent to missing out on slumber altogether. “We know that these effects accumulate and therefore the functional price new parents — who awaken three to ten times a night for months on end — pay for common infant sleep disturbance is enormous,” he said in a statement.

In addition to parents with young children, the findings are applicable to people in certain age groups that experience fragmented sleep, as well those with jobs where frequent night wakings are common.

Previously: Stanford expert: Students shouldn’t sacrifice sleep, What are the consequences of sleep deprivation? and Study: Parents may not be as sleep-deprived as they think
Photo by Christina Spicuzza

Patient Care, Research, Stanford News

New study shows standardization makes hospital hand-offs safer

New study shows standardization makes hospital hand-offs safer

A study published online this week in Pediatrics offers encouraging results from a large-scale effort to tackle a persistent safety problem in hospitals. The study is the first scientific investigation of a multi-hospital project to improve patient hand-offs, the times when a patient’s care is being transferred from one person to another.

When hand-offs go wrong, the doctors and nurses taking over a patient’s care may not understand the individual’s diagnosis or current problems. They might not know which tests have been completed or which medication doses have already been given. These types of errors can, at best, waste everyone’s time, and, at worst, harm patients.

Fortunately, these latest findings demonstrate how hospitals can cut back dramatically on such problems. The one-year study of 23 pediatric hospitals across the country found a significant drop in hand-off related care failures when the process was standardized. Researchers examined both shift changes and patient transfers from one hospital department to another. The rate of hand-off related care failures went from slightly over 25 percent at baseline to about 8 percent by the end of the study. (Researchers didn’t measure actual harm to patients, but rather communication failures that could have resulted in harm had they gone unnoticed.)

“Surprisingly, this manuscript was amongst the first of its kind to actually show a decrease hand-off-related care failures,” senior author Paul Sharek, MD, medical director of quality management and chief clinical patient safety officer at Lucile Packard Children’s Hospital Stanford, said in an e-mail.

How did they improve so dramatically? By defining every element of the hand-off, including the interactions’ intent, content, process and team leadership. At the end of the study, the researchers identified several elements of good hand-offs, including the need for active participation by both sending and receiving teams; a defined opportunity for the receiving team to ask questions; a script of all the important hand-off elements; and a summary of basic issues and next steps for each patient. Overall, caregivers were satisfied with the new process, suggesting they’d buy into it for the long run.

“Given the increasing recognition of the risk of hand-offs in health care, these findings reassure us that large-scale improvements in hand-0ff safety can be achieved rapidly,” the researchers write.

Previously: Less burnout, better safety culture in hospitals with hands-on executives, new study shows, How efforts to mine electronic health records influence clinical care and Automated safety checklists prevent hospital-acquired infections, Stanford team finds

Chronic Disease, NIH, Patient Care, Research

NIH network designed to diagnose, develop possible treatments for rare, unidentified diseases

doctors' tools - smallVertigo, nausea, headache, fatigue, confusion. For years someone close to me has experienced severe and periodic bouts of these symptoms. It’s clear something is wrong and yet, despite countless tests and visits with specialists in cardiology, neurology, ophthalmology, pulmonology, otolaryngology, and immunology, no one has been able to figure out what that something is. At one of his last appointments – to the great disappointment of this patient and (perhaps even more so) his worried and frustrated wife – my loved one was gently told that he may have to face the very real possibility that he’ll never get a definitive diagnosis.

Unfortunately, this patient is far from alone: Plenty of people are living with mysterious symptoms that affect their quality of life (or worse), and it’s not uncommon for patients with rare diseases to have waited years for their diagnosis. With this in mind, the National Institutes of Health launched in 2008 its Undiagnosed Diseases Program, a pilot program designed to “provide answers to patients with mysterious conditions that have long eluded diagnosis” and “advance medical knowledge about rare and common diseases.” (Since that time, 600 children and adults have been evaluated, and approximately 100 patients were given a diagnosis.)

Now, the program is being expanded into the Undiagnosed Diseases Network, with the NIH announcing last week that six medical centers – including Stanford – will be joining and contributing local medical expertise. The NIH will work with experts from these centers (including Euan Ashley, MD, PhD, Stanford’s principal investigator) to, as described in a release, “select from the most difficult-to-solve medical cases and together develop effective approaches to diagnose them.” The physicians will “collect and share high-quality clinical and laboratory data, including genomic information, clinical observations and documentation of environmental exposures,” and they’ll “benefit from common protocols designed to improve the level of diagnosis and care for patients with undiagnosed diseases.”

In our online story on the network and the $7.2 million grant that Stanford received, Matthew Wheeler, MD, medical director for the grant, notes that “Stanford was chosen for our informatics expertise, our experience with clinical interpretation of whole-exome and whole-genome data, and our scientific potential to follow up any lead.” As my colleague Erin Digitale further explained:

The team will use cutting-edge genomics and medical phenotyping techniques to diagnose patients, and will also aim to understand the underlying biology of patients’ conditions so they can generate targets for new therapies, Wheeler said. “We aim to make a deep dive into each patient’s biology,” he added.

By the summer of 2017, each new clinical site is expected to see 50 or more patients per year. Referring clinicians can submit applications on behalf of undiagnosed patients on the program website.

Previously: Using crowdsourcing to diagnose medical mysteries, New search engine designed to help physicians and the public in diagnosing rare diseases and The road to diagnosis: How to be insistent, persistent and consistent
Photo by Adrian Clark

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