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Chronic Disease, Global Health, Medical Apps, Public Health, Public Safety, Research

The right tool for the job: Creating a waterborne disease reporting system for Nepal

Fig 3When I last spoke with cholera expert Eric Jorge Nelson, MD, PhD, he was about to field test a tool to help doctors in Bangladesh diagnose, treat and report cholera outbreaks in real time using a smartphone app. Now that this reporting system is up and running, he’s working to create similar reporting systems for doctors elsewhere. But, as he learned in the remote regions of Nepal, a high-tech approach isn’t always the best approach.

Nelson was invited to Nepal by his colleague Jason Andrews, MD, an infectious disease expert who works with the Dhulikhel Hospital, to share his expertise on recognizing, responding to and containing cholera outbreaks.

Like Bangladesh, Nepal has seasonal outbreaks of waterborne diseases, including cholera, Typhoid, viral hepatitis and dysentery, that ebb and flow with the monsoon seasons. What made the situation in Nepal urgent, Nelson told me, is that waterborne diseases can also arise after natural disasters, and a 7.8 magnitude earthquake struck Nepal last spring and more than 100 aftershocks have hit the region since.

An added complication, Andrews explained, was that Nepal’s government wasn’t scaling up waterborne disease surveillance in the rural areas following the earthquakes. “Our colleagues at Dhulikhel Hospital, by contrast, were extremely proactive and committed to setting up a system before an outbreak hit,” Andrews said.

Nelson was only in Nepal for about 48 hours, but during those two days he and Andrews began to tackle the problem of how to prevent a large-scale cholera outbreak there. At first, it seemed plausible that the smartphone app designed for Bangladesh would work in Nepal — but Nelson said they quickly realized that Nepal’s post-earthquake infrastructure wasn’t suited to a smartphone reporting system.

“There were few resources in Nepal and little time to ramp-up a reporting system,” Nelson said. “Charging a smartphone requires a stable power supply, and although the 3G networks within the city were fine, they weren’t good in the canyons.”

This is where Andrews’ expertise came in. His knowledge of Nepal and experience building surveillance systems with “just the bare bones” (as he put it) helped the team reverse engineer the smartphone app Nelson used in Bangladesh and use elements of it to create a paper-based surveillance system that’s better suited to the post-earthquake situation in rural Nepal.

“This was a risky endeavor,” Andrews said. “We didn’t have funding so we drew upon our own existing resources. Funding takes a while, the earthquake was in April and the monsoon hits in June. If we had waited, the monsoon season would have passed. We realized we could scale this up really quickly with minimal resources and it was worth the risk.”

Now, the team’s paper-based system has been working for several months and Nepal’s government is interested in replicating the model at a larger level.

“I learned two important lessons during my trip to Nepal,” Nelson told me. “I learned the power of winnowing a complicated process, like our smartphone app, down. I also learned how we can broaden what we did in Bangladesh for a wider community.”

He continued: “Hopefully we are emerging from the idea that mobile technology is a panacea. We need to be open to considering high — or low — tech strategies depending on what the on-the-ground situation is. We happened to have two very different design challenges in Bangladesh and Nepal: Mobile was best for Bangladesh and paper was best for Nepal. You have to build what the end-user desires, is feasible and is viable. I think the mhealth field is waking up to this reality.”

Previously: A tale of two earthquakes: Stanford doctor discusses responses to the Nepal and Haiti disastersReporting and treating cholera: Soon, there could be an app for thatDay 1: Arriving in Nepal to aid earthquake victims and Using social media to fight cholera
Photo courtesy of U.u.H. Schmel and R.K. Mahato

Autoimmune Disease, Chronic Disease

The importance of providing patient support in the face of a life-threatening illness

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from Sara Wyen, a survivor raising awareness about the devastating effects of blood clots.

As a long-distance runner, I was accustomed to pain of some sort, primarily in my knee due to a lingering injury that often caused serious pain. So, when I wrapped up a run one Saturday with excruciating left knee pain, I really didn’t think anything of it. But the pain persisted throughout the weekend and was soon accompanied by a stabbing pain in my left side and shortness of breath.

I found out very quickly I most definitely wasn’t alone, but I may have never known without encouragement from my physician

At the urging of my primary care physician, I went to the emergency room and was admitted to the hospital two days later. I had a blood clot in my leg, known as deep vein thrombosis (DVT), and a blood clot in my lung, known as pulmonary embolism (PE). Having never been hospitalized in my life, I was scared, weak, exhausted and in more pain than I had ever experienced. I was put on IV blood thinners and kept in the intensive care unit for several days as doctors monitored my volatile condition due to the blood clot passing dangerously through my heart. I wondered what was happening and whether I would survive.

In the coming days, I was moved to the cardiac unit (the youngest on the floor at just 29 years old) and due to the persistence of one doctor who is now my hematologist, I was diagnosed with antiphospholipid antibody syndrome (APS). I soon learned that APS is an autoimmune condition in which the body mistakenly produces antibodies against itself that contribute to abnormal blood clotting. APS, combined with my use of estrogen-based oral contraceptives, was to blame for my blood clots.

The coming weeks and months of my recovery were the most difficult I’ve ever faced in my life. I could no longer do the things I loved to do, like run, or the things I had to do, like work, and I needed to use an oxygen tank and wheelchair. My strength was depleted, my leg and lungs hurt, and I was grappling with a diagnosis of a lifelong disorder that requires continuous care and medication. I was consumed with unwavering anxiety and depression.

The most frustrating part was that to everyone on the outside, I looked and seemed fine, but I was fighting the biggest battle of my life. I felt betrayed by my body, which I had taken great strides to take care of with healthy eating and exercise. I felt completely isolated by what was happening to me, and doctor support became crucial during the extensive recovery period.

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Aging, Chronic Disease, Neuroscience, Patient Care, Research, Stanford News, Stroke

Stanford study: Commonly used sleeping pill may boost stroke recovery

Stanford study: Commonly used sleeping pill may boost stroke recovery

sleeping pillIf what works in mice works in people, a widely popular sleeping pill could someday start seeing action as an aid to stroke recovery, according to a study carried out by Stanford neuroscientists Gary Steinberg, MD, PhD, and Tonya Bliss, PhD, and published in Brain.

Count to 40. Chances are that sometime between when you start and when you finish, someone in the United States will experience a stroke. That’s how common they are: about 800,000 strokes every year in the U.S., and – far from being confined to rich countries – around 35 million worldwide.

But that’s just the number of new strokes annually. Unfortunately, a stroke isn’t something you just get and then get over. Few people fully recover, leaving some 5.4 million Americans currently saddled with stroke-caused disabilities.

The main way for anyone incurring a stroke to minimize its damage is to get to a treatment center right away. As I wrote in a news release summarizing the study’s findings:

A stroke’s initial damage, which arises when the blood supply to part of the brain is blocked, occurs within the first several hours. Drugs and mechanical devices for clearing the blockage are available, but to be effective they must be initiated within several hours of the stroke’s onset. As a result, fewer than 10 percent of stroke patients benefit from them.

I repeat: Get to a treatment center right away. Don’t wait “to see if it blows over.” But since even in the best-case scenario many stroke sufferers will sustain some brain damage, the next best thing is a treatment that could help undo that damage – if only there were one.

Sad to say, no effective treatments during the recovery phase exist other than physical therapy, which has been shown to be only marginally successful. So anything that could enhance patients’ recovery during the  three- to six-month post-stroke period when 90 percent of whatever recovery a patient’s going to experience occurs, as a rule, would be a home run.

In their study, Steinberg, Bliss and their colleagues swung for the fences. They induced strokes in animal models, then waited for a few days to make sure that what they planned to do next, if it helped, was working during the recovery phase rather than the rush-rush damage-control phase.

Then they gave some of the mice the FDA-approved insomnia drug zolpidem (better known by the trade name Ambien) and others a control solution that did not contain the drug. Over the next month, they compared the mice’s performance on various tests of sensory and motor-coordination ability. By several measures, the zolpidem-treated mice were back at their pre-stroke levels within a few days of treatment; the control mice took the entire month. (Unlike humans, mice do eventually recover from strokes even when untreated.)

Mice are mice, and humans are humans. But Zolpidem’s already-on-the-market status greatly improves the prospects for clinical trials of the drug. And wouldn’t it be ironic if faculties slumbering under a stroke’s spell could be awakened by a pill designed to put us asleep?

Previously: Targeted brain stimulation of specific brain cells aids stroke recovery in mice, Calling all pharmacologists: Stroke-recovery mechanism found, small molecule needed and Brain sponge: Stroke treatment may extend time to prevent brain damage
Photo by Guian Bolisay

Chronic Disease, Fertility, Men's Health, Research, Stanford News

Male infertility linked to host of other ailments

Male infertility linked to host of other ailments

A new study offers some important news to men struggling to have children: Infertile men appear more likely than their fertile counterparts to develop other ailments, including diabetes, and heart disease, and also face a higher risk of alcohol or drug abuse.

“I think it’s important to know that sperm counts and fertility may tell a little more than just about reproductive potential,” Stanford urologist Michael Eisenberg, MD, lead author of the study, said.

The study was published yesterday in Fertility and Sterility, and our release offers more details:

The researchers examined records filed between 2001 and 2009 of more than 115,000 reproductive-aged men from an anonymized insurance claims database. They analyzed the men’s medical visits before and after fertility testing to determine what health complications they developed in the years after fertility evaluations. The researchers compared general health conditions of men with infertility diagnoses to men without the diagnoses and to vasectomized men.

Of the three groups, infertile men had higher rates of most diseases the researchers were screening for in the study, including heart disease and diabetes, even when results were adjusted for obesity, smoking and health-care utilization. In addition, men with the most severe form of male infertility had the highest risk of renal disease and alcohol abuse.

Eisenberg said he hopes the findings have a silver lining: “For members of this group of reproductive-age men, they usually don’t go to the doctor unless there is a big problem. A lot of time fertility is one of the first things that brings them to the doctor, so in some ways that might be an opportunity to engage the health-care system and see what’s going on with their general health.”

Previously: Sleep apnea linked with male infertility, Male infertility can be warning of hypertension, Stanford study finds and Ask Stanford Med: Expert in reproductive medicine responds to questions on infertility

Big data, Cancer, Chronic Disease, Precision health, Research, Stanford News

A dive into patient records uncovers possible connection between cancer treatment, Alzheimer’s

A dive into patient records uncovers possible connection between cancer treatment, Alzheimer's

Shah

When we think of patient medical records, a lot of us think of billing and coding and maybe of health-care providers communicating with one another about how patients are doing. But increasingly medical records are becoming grist for the big-data mill.

According to Nigam Shah, MBBS, PhD, associate professor of biomedical informatics research at Stanford, it’s now possible to artfully extract important biomedical information from pre-existing patient medical records. Such data can be anonymous for the patient, and it’s virtually free for researchers, especially compared to the high cost of lengthy clinical trials that enroll thousands of people.

A just-published study by Shah and his colleagues used patient records to examine a suspected connection between a treatment for prostate cancer and the subsequent risk of developing Alzheimer’s disease. Among a group of about 17,000 prostate cancer patients, those treated with a medication that suppresses testosterone — so-called androgen blockers — had nearly twice the overall rate of later developing Alzheimer’s disease. In absolute numbers, more people are likely helped by the androgen blocking treatment than hurt, but the results are sobering.

The dilemma this finding raises — to take the drug or not — could be solved with a precision-health approach that would clarify which patients should take androgen blockers and which ones should pass. The trick will be to sort the prostate cancer patients who can benefit most from androgen blockers from those whose risk of developing Alzheimer’s is most likely to be increased by the drug.

With any luck, patient medical records can help provide that answer, too.

Previously: Stanford-based Alzheimer’s Disease Research Center to be launchedNew technology enabling men to make more confident decisions about prostate cancer treatment and How efforts to mine electronic health records influence clinical care
Photo of Nigam Shah by Steven Fisch

Chronic Disease, Clinical Trials, Mental Health, Research, Stanford News

Treating insulin resistance may speed recovery from major depression

Treating insulin resistance may speed recovery from major depression

depressionIn a randomized, placebo-controlled clinical trial detailed in this study in Psychiatry Research, pioglitazone – a generically available drug that’s approved for type 2 diabetes – helped to relieve symptoms of major depression in patients whose blues had withstood an assault by standard therapeutic regimens for six months or longer.

But this beneficial effect was seen only in depressed patients who were also insulin-resistant.

Depression is remarkably common. Stanford psychiatric researcher Natalie Rasgon, MD, PhD, the study’s senior author, told me that close to one in five Americans are diagnosed with depressive illness at some point in their lives.

Insulin resistance, a stepping stone on the path to type 2 diabetes (not to mention cardiovascular disease and probably Alzheimer’s), is even more common: About one in three otherwise healthy Americans – and an even greater share of people with depression – are insulin-resistant. Especially prevalent among overweight people, insulin resistance also occurs more often than one might expect even among thinner folks, a lot of whom don’t have the faintest idea that’s the case.

Insulin, released by the pancreas in response to food intake, alerts cells throughout the body to the presence of glucose, the body’s primary energy source, in the blood. Insulin-resistant people’s cells fail to take up glucose adequately, leaving high residual blood levels of the sugar to wreak havoc on the body’s tissues. Because the brain is a glucose glutton – it soaks up about 20 percent of all glucose consumption in a healthy, active person – it’s easy to imagine that lousy glucose uptake in the brain would have all kinds of deleterious effects, including effects on mood. Food for thought, anyway.

Here’s how my news release described the study:

[R]esearchers were blinded as to which patients were receiving pioglitazone versus a placebo. The patients didn’t know which they were getting, either. … All the patients had been experiencing episodes of depression lasting, on average, more than one year. Their symptoms had failed to remit under standard treatment regimens. They remained on these regimens for the duration of the Stanford study and, in addition, were given either pioglitazone or a placebo. … The patients were tested for depression severity and insulin resistance at the study’s outset and then roughly every two weeks from the beginning of the trial to the end.

A total of 37 patients – 29 women and eight men – completed the 12-week study. The insulin-sensitive subjects did about as well on the drug as they did on placebo. But among the insulin-resistant group, those given pioglitazone showed a much greater improvement than those who got a placebo. They also showed more improvement than insulin-sensitive patients did.

The more insulin-resistant a participant was at the beginning of the study, the better the drug’s antidepressant effect. Possible, but not proven, explanation: It could be that for some patients standard antidepressant therapies can kick into gear only once these patients’ insulin resistance is reduced. Hungry brains gotta eat.

Previously: Survey shows nearly a quarter of U.S. workers have been diagnosed with depression in their lifetime, Revealed: the brain’s molecular mechanism behind why we get the blues, and International led by Stanford researchers identifies gene linked to insulin resistance
Photo by S.Hart Photography

Chronic Disease, Events, Stanford News

A reminder before World Diabetes Day: “We need more people educated about the disease”

A reminder before World Diabetes Day: “We need more people educated about the disease"

Bay Area native Anna Simos had always been the healthy one in her family — never a candy eater, she said — but, at 15, she was diagnosed with what had been the traditional family illness: diabetes. “My grandmother and uncle had Type 1 diabetes and my father Type 2, so with that diagnosis, I knew what it meant,” she said. “It was sobering and I knew there was no easy way out.” She remembers that day quite clearly. “The doctor brought in a syringe with insulin and told me to give myself a shot. I asked him how many times do I do this every day? Probably four to six, he said. I was not happy.”

Over the years, and through a pancreas and two kidney transplants, Simos learned how to balance her diet, lifestyle, medications and essential medical equipment to live a life with Type 1 diabetes. “I had figured it out for myself, but I began meeting others with diabetes and I decided I would do something with this on-the-job training.” She also earned a master’s degree in public health and a master’s degree in the epidemiology of diabetes.

She received so much of her medical care at Stanford Health Care, she began to dream about what she could do to help there, too. Today, Simos, now a certified diabetes educator and diabetes clinical research coordinator at Stanford, will see one of her combined personal and professional goals met: Stanford Health Care’s first Diabetes Prevention and Wellness Health Fair, being held today in recognition of the upcoming World Diabetes Day.

The fair is a free, public event, and Charlie Kimball, a Formula 1 Indy car driver who has diabetes, will be there to talk about how his experience living with diabetes. Among the other features of the event: Fifteen non-profits and vendors, clinicians from Stanford Health Care and Stanford Children’s Health, and other diabetes education experts will offer free risk assessments, updates on diabetes care technology, food demonstrations and nutrition education. “Everyone’s coming together for the first time,” Simos said. “You’re going to learn something if you come, because it’s not just about diabetes — it’s also about prevention.”

Simos is pushed by the numbers: The Centers for Disease Control and Prevention estimates that 387 million adults have a form of diabetes. About 86 million American adults— more than 1 in 3 are pre-diabetic. That condition, defined by blood sugar levels that are above normal but not high enough for a Type 2 diagnosis, increases the risk of heart disease, stroke and Type 2 diabetes. “Diabetes and pre-diabetes are at epidemic levels,” Simos said. She knows how much easier it is to make the dietary and behavior changes than to develop the disease and possibly suffer the worst of its consequences. “We want to help prevent the transplant, the amputation, the blindness — that we can turn around with care,” she said. “We need more people educated about the disease. If we can just get people to start thinking about their risk factors, we can take a different approach to diabetes: prevention.”

Previously: A conversation about the diabetes epidemic and The role of nutrition in diabetes prevention and management
Photo, of Anna Simos meeting with patient Ed Grey earlier this week, by Norbert von der Groeben

Chronic Disease, Patient Care, Pediatrics, Stanford News

Helping kids with chronic medical conditions make the jump to adult care

Helping kids with chronic medical conditions make the jump to adult care

With just one dramatic example from her practice, Stanford pediatric critical care specialist Yana Vaks, MD, recently illustrated for me the importance of better adult health care for children who survive a catastrophic childhood illness or endure an incurable medical diagnosis.

“There was an 18-year-old who came to the hospital in crisis,” she said. “He had a liver transplant when he was 8, but when he turned 18 he wanted to start a new life and decided he was done with all that extra health consciousness his transplant meant.” The patient had stopped taking the drugs necessary to keep his body from rejecting the transplant and neglected to see his doctor regularly. By the time Vaks saw him, his transplanted liver had begun to fail, starting a catastrophic process that affects all body systems. “It was a shocking case,” she said. The teenager died the next day.

His mother told Vaks that the biggest challenge had been the 18th birthday, that legal coming of age where parents can no longer control what medications their children take.

As I did the reporting for a Stanford Medicine story called “When I Grow Up,” I was shocked to learn just how many young adults fall into the categories of survivor or chronically ill: They may soon represent 10 percent of the U.S. population ages 15 to 25. Before advances in treatment began saving so many lives, that population was just 1 percent.

The specialists who treat these growing children have long recognized the challenges related to this patient population: Young adults may be grown in body, but they aren’t always ready psychologically or socially to take full responsibility for consistently following complicated medical routines and practicing lifestyle restrictions. Nor are most adult care doctors trained in the after-effects of childhood cancer, for instance, or the lifelong need to monitor adults with childhood heart repairs.

What’s needed is something called transition care — but no one had studied just what that should look like. The Clinical Excellence Research Center, established in 2010 to study, design and demonstrate ways to improve health care while reducing costs, identified transition care as a good candidate for the changes it hopes to effect with its work. For two years, CERC gathered information, reviewed research, interviewed patients and families and visited hospitals around the country, and it has launched pilot programs – including one at Stanford Children’s Health – to test its recommendations:

The CERC team’s recommendations emphasize that pediatricians and pediatric specialty teams must be guides in this process: equipping patients and parents with information so they can anticipate the transition, coaching patients to develop the confidence and skills needed to manage their health, and locating and being available to specialists and primary care physicians who will need certain medical knowledge to care for their patients as adults.

Previously: Stanford Medicine magazine tells why a healthy childhood mattersStudy highlights childhood cancer survivors’ increased risk of future health problemsQuestioning whether physicians are equipped to care for childhood cancer survivors and Chronic illness in childhood: One patient’s story
Illustration by Daniel Horowitz

Chronic Disease, Infectious Disease, Microbiology, Research, Science, Stanford News

Bad actors: Viruses, pathogenic bacteria co-star in health-horrific biofilms

Bad actors: Viruses, pathogenic bacteria co-star in health-horrific biofilms

biofilmA group under the direction of Stanford infectious disease investigator Paul Bollyky, MD, PhD, has uncovered a criminal conspiracy between two microbial lowlifes that explains how some of medicine’s most recalcitrant bacterial infections resist being expunged.

In a study published today in Cell Host & Microbe, Bollyky and his associates reveal that bacterial pathogens responsible for a big chunk of chronic infections can team up with a type of virus that bacteria ordinarily consider their worst enemies to form biofilms, which, our news release on the study explains, are “slimy, antiobiotic-defying aggregates of bacteria and organic substances that stick to walls and inner linings of infected organs and to chronic wounds, making infections excruciatingly hard to eradicate.” More from that release:

Biofilms factor into 75 to 80 percent of hospital-acquired infections, such as those of the urinary tract, heart valves and knee-replacement prostheses, Bollyky said. “A familiar example of a biofilm is the plaque that forms on our teeth,” he said. “You can brush twice a day, but once that plaque’s in place you’re never going to get rid of it.”

The study first focused on Pseudamonas aeruginosa, which accounts for one in ten hospital-acquired infections, many chronic pneumonia cases and much of the air-passage obstruction afflicting cystic-fibrosis patients.

Cystic fibrosis is deadly mainly because of biofilms formed by P. aeruginosa, Bollyky told me. “These biofilms fill up all the air spaces, and antibiotics can’t seem to penetrate them,” he said.

But he and his colleagues found that P. aeruginosa forms biofilms only when it’s been infected itself.

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Cardiovascular Medicine, Chronic Disease, Dermatology, Research, Stanford News

Limb compression device reduces skin infections caused by lymphedema

Limb compression device reduces skin infections caused by lymphedema

Key among the nasty problems caused by lymphedema, a common cardiovascular disease that causes limb and trunk swelling, is the risk of skin infection. Lymphedema causes the skin to thicken and become inelastic, which open the doors for infection to enter more easily; according to Stanford’s Stanley Rockson, MD, about 25 percent of lymphedema patients experience recurring infections that can result in hospitalization.

Thus the results of a recent study published in JAMA Dermatology offers some exciting news, says Rockson, a world renowned expert in lymphedema.

The fact that we saw dramatic reductions in the incidence in rate of infections… is very noteworthy

In the study, an advanced model of a pneumatic compression device used to treat lymphedema was found to reduce skin infections from the disease by nearly 80 percent. Rates of cellulitis, the medical term for such skin infections, were lowered from 21 percent to 4.5 percent in the people with lymphedema due to cancer and from 28.8 percent to 7.3 percent in individuals whose lymphedema was not due to cancer.

Pneumatic compression devices, which have been in use for decades, are inflatable garments that when applied to the swollen area of the skin inflate and deflate in cycles to help drain lymph fluid build up. Most of these devices simply apply an increasing degree of pressure from the garment, but the model used in this study goes a step further. As Rockson, a co-author on the study, explains in a podcast accompanying the journal article:

This device works not just by adding pressure… It actually intends to simulate the intervention used by physical therapists when they do manual lymphatic massage. It places very low pressure stress on the skin increasing the filling of the lymphatic capillaries and thereby stimulating intrinsic contractility.

The idea is that the distribution of the pressure can be relegated and the treatment more targeted, he says.

“The fact that we saw dramatic reductions in both the incidence in rate of infections as well as the decreases in cost-related to care, ER visits, hospitalizations, intravenous antibiotics, is very noteworthy,” Rockson concludes.

The research was conducted at the University of Minnesota School of Public Health in collaboration with Vanderbilt University School of Nursing.

Previously: Home health care treatments for lymphedema patients cut costs and improve care; New Stanford registry to track lymphedema in breast cancer patients.

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