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Chronic Disease

Addiction, Aging, Chronic Disease, Pain

National survey reveals extent of Americans living with pain

National survey reveals extent of Americans living with pain

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Yesterday, the NIH announced a new analysis of data that examined how much pain people in America suffer. The findings, published in The Journal of Pain, were based on data from the 2012 National Health Interview Survey (NHIS), an annual survey that asks a random sample of U.S. residents a wide variety of questions about their health.

The survey results are staggering: More than half of the adults in the country (126 million) had some kind of pain, minor to severe, in the three months before the survey. About 25 million had pain every day for that time frame and about 40 million suffer from severe pain. Those with the worst pain were also most likely to have worse health in general, use more health services and have more disabilities.

The survey also looked at complementary medicine approaches people take to dealing with their pain. Natural dietary supplements topped the list, followed by deep breathing and physical exercise such as yoga, tai chi or qi gong.

Joseph Briggs, director of the National Center for Complementary and Integrative Health was quoted in an article about the new study in the Washington Post:

The number of people who suffer from severe and lasting pain is striking. . . This analysis adds valuable new scope to our understanding of pain … It may help shape future research, development and targeting of effective pain interventions, including complementary health approaches.

Another topic the WaPo article touched on, which we’ve written about here at Scope, is the link between chronic pain and prescription painkiller abuse:

The prevalence of chronic pain in America also lies at the root of an ongoing epidemic of prescription painkiller abuse. Since 1999, according to the Centers for Disease Control and Prevention, the amount of painkillers such as oxycodone and hydrocodone sold in the United States has nearly quadrupled.

Here at Stanford, the Division of Pain Medicine is sponsoring a free back pain education day on Saturday September 13. You can find out more details here.

Previously: Assessing the opioid overdose epidemicChronic pain: Getting your head around itFinding relief from lower back pain and Stanford researchers address the complexities of chronic pain
Photo by Steven Depolo

Chronic Disease

“What might they be interested in learning from me?” Tips on medical advocacy

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 a patient with Marfan syndrome.

Being an advocate to the medical community is an important way to raise awareness of your condition.

Many people throughout the years have asked me why I became an advocate, and my answer is found in what was a perfect storm of several factors. One large one was losing my ability to work in the executive career that I had made major advancements in. This loss, coupled with having to navigate the social security disability system and the back-and-forth with my private disability insurance company, made my overall health (both physical and mental) much worse. It’s one thing to have to suffer with one’s health (or lack thereof) but to have to fight for benefits that you’ve earned and payments from a private insurance policy that you’ve paid decades for, while dealing with the many financial challenges that accompany the incredibly difficult decision to stop working make for a very lonely and aggravating time.

By going through rough times, I learned what works and what to avoid – and I made a promise to myself that I would help others through the process. I want to be a source of support and let patients know that they’re not alone and that there are better days ahead. Not only am I helping others advocate for themselves but also by doing so, I help myself. It’s a good feeling to help another person; it’s my medicine for dealing with my day-to-day health challenges.

It can be daunting, however, to do advocacy work and to reach out to the medical community, whether it be a hospital, a medical school, a local health fair, a private medical practice or your own doctor/health-care provider’s offices. In the last 15 years of working on various forms of medical advocacy, I’ve found through trial and error some useful steps in obtaining the best results in each area of the medical community and all health-related entities.

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Big data, Cardiovascular Medicine, Chronic Disease, In the News, Research, Stanford News

Using “big data” to improve patient care: Researchers explore a-fib treatments

Using "big data" to improve patient care: Researchers explore a-fib treatments

Turakhia photoA Stanford cardiac electrophysiologist and colleagues have used a unique research method to learn more about atrial fibrillation. Mintu Turakhia, MD, and collaborators at Medtronic and Massachusetts General Hospital, extracted data out of decades of continuously recorded medical information from implanted medical devices – pacemakers and defibrillators — in 10,000 heart patients. Then they linked it to medical records, and analyzed it.

The researchers’ goal was to explore whether patients who experienced sudden attacks of a-fib, an irregular and rapid heart rate caused by spasms of the heart’s upper chambers, should be treated with long-term anticoagulants like those who had permanent a-fib or whether perhaps temporary drug therapy could be considered an option. They wanted to know if a patient’s risk of stroke changes as a-fib comes and goes.

The results, which were published recently in Circulation: Arrhythmia and Electrophysiology, found that patients were at an increased risk of stroke the first seven days after their hearts went into a-fib.

A-fib, which afflicts more than 3 million Americans, is known to increase a patient’s risk of stroke – but exactly when this risk occurs is controversial. Currently, physicians recommend long-term anticoagulation for patients, whether the a-fib occurs in sudden attacks or is continuous. This study indicates that transient use of anticoagulants could be an option for some patients and deserves further investigation. Future treatment plans might explore the idea of some kind of wearable device that shows when a patient goes in and out of a-fib, then taking medications just when needed rather than for a lifetime, said Turakhia.

Turakhia told me the study also provides an important example of how using “big data” research methods can ultimately lead to improved clinical care. In an email, he explained:

This is truly a big data approach where we took raw data from implanted pacemakers and implanted defibrillators and linked it to clinical data. The medical device data comes from home remote monitoring systems that patients have and goes to the cloud. We pulled the raw data off the cloud and linked it to VA (Veterans Affairs) electronic health records, VA claims, Medicare claims, and death records. This is truly a novel approach where we are assembling highly disparate data sources and linking them to gain insight into disease.

Previously: A little help from pharmacists helps a-fib patients adhere to prescriptions, Study highlights increased risk of death among patients with atrial fibrillation who take digoxin and What is big data?
Photo of Turakhia by Norbert von der Groeben

Aging, Ask Stanford Med, Chronic Disease, Neuroscience, Women's Health

Exploring Alzheimer’s toll on women

Exploring Alzheimer’s toll on women

Julianne Moore AlzheimersIn last year’s “Still Alice,” Julianne Moore’s portrays a woman beset by early-onset Alzheimer’s Disease. It’s fitting that the academy-award winning film (Moore garnered a Best Actress award for her role) about Alzheimer’s features a woman as the central character because the illness disproportionately affects women.

The BeWell@Stanford blog recently featured a Q&A with Stanford neurologist and Alzheimer’s researcher Michael Greicius, MD, MPH about Alzheimer’s and women. The piece covers the effects of the disease, but I was intrigued to read about the challenges for caregivers of people with the disease (who are also disproportionately women):

Most of the caregivers of people with Alzheimer’s Disease are women. Do you have any advice for them in terms of how they can take care of themselves while taking care of a loved one with the disease?

This gets to the damned-if-you-do, damned-if-you-don’t aspect of AD and women. On the one hand, women are more likely to develop AD; on the other hand, they are also more likely to find themselves as the primary caregiver for someone with AD. It is now well known that caring for someone with AD has a powerful, negative impact on physical and emotional well-being. Particularly as the disease progresses and patients require more care, there is a large physical toll taken when, for example, having to lift patients out of a chair or off the toilet or out of bed. Sleep becomes fractured for the patient. which means it becomes fractured for the caregiver.

Some of the questions also dealt with the fact that despite the recent advances in Alzheimer’s research, we still don’t completely understand how the disease works or how it can be prevented:

What can we do to reduce our risk for developing the disease?

We do not know of anything that definitely reduces a person’s risk of developing Alzheimer’s, although there is strong data to suggest that regular aerobic exercise and a heart-smart diet will reduce risk. Head trauma is an important risk factor for AD and another type of dementia, so minimizing exposure to head trauma can also reduce risk of AD. Numerous companies make explicit or implicit claims about their “nutraceutical” or vitamin or “brain-training” software being able to stave off AD. None of these claims are true and most, if not all, of these purveyors are modern-day snake-oil salesmen and saleswomen.

But Greicius is optimistic and pointed out that Stanford recently became an NIH-sponsored Alzheimer’s Disease Research Center, which means we can build upon Stanford’s past “ground-breaking Alzheimer’s research.”

Previously: Are iron, and the scavenger cells that eat it, critical links to Alzheimer’s?Alzheimer’s forum with Rep. Jackie Speier spurs conversation, activismScience Friday explores women’s heightened risk for Alzheimer’s and The toll of Alzheimer’s on caretakers
Photo by Maria Morri

Cancer, Chronic Disease, Dermatology, Stanford News, Surgery, Transplants

Rebuilding Cassie’s smile: A lung transplant patient’s struggle with skin cancer

lung patientWhen I first met Cassie Stockton, she was seated in an exam chair in Stanford’s dermatology clinic, getting cosmetic skin treatments. Lovely and young, just 21 years old, it seemed a bit silly. How could she possibly need injectable lip fillers or laser skin treatments?

I knew Stockton had a lung transplant at 15 and that the immunosuppressant drugs she was required to take to keep her body from rejecting the donated lungs had made her susceptible to skin cancer. But it wasn’t until I researched her story in depth that I truly understood how she ended up needing regular cosmetic treatments here.

As I explain in my recently published Stanford Medicine article, her story began at birth:

Born premature, [Cassie] was intubated the first two weeks of life, then sent home with her mother and an oxygen tank. She remained on oxygen 24 hours a day for the first two years of her life. Eventually, she was diagnosed with bronchopulmonary dysplasia, a chronic lung disorder …

Sixteen years later, the donated gift of new lungs saved her life – but it left scars, both emotional and physical:

The day Stockton woke up out of the anesthesia six years ago after a 13-hour surgery at the Transplant Center at Lucile Packard Children’s Hospital Stanford, she breathed in oxygen with newly transplanted lungs, and breathed out sobs. Tears streamed down her face. “At first, I thought she was in pain,” says her mother, Jennifer Scott, who stood by her side. But that wasn’t it. Stockton was overwhelmingly sad because she now knew her new lungs were the gift of a child. It was Dec. 6, 2009, just before Christmas. The death of someone else’s child had given her a whole new life.

And now:

Every four months, she and her fiancé make the four-hour drive from their home in Bakersfield, California, past the oil rigs and cattle farms to Stanford’s Redwood City-based dermatology clinic for her skin cancer screening. It’s been two years of treatments: freezings, laserings, a total of eight outpatient skin surgeries — the most significant resulting in the removal of the left half of her lower lip. The dermatologic surgeon removes the skin cancers, and then gets to work to repair the damage. “It’s heart-breaking to have to remove the lip of a 21-year-old woman,” says Tyler Hollmig, MD, clinical assistant professor of dermatology and director of the Stanford Laser and Aesthetic Dermatology Clinic, who leads Stockton’s treatment and keeps her looking like the young woman she is, restoring her skin, rebuilding her lip, making sure she keeps her smile.

Stockton doesn’t complain about any of the struggles she’s had post transplant. She knows she got a second chance at life. And, she tells me, it’s her job to take care of the lungs given to her by that child who died.

Previously: This summer’s Stanford Medicine magazine shows some skin
Photo by Max Aguilera-Hellweg

Cardiovascular Medicine, Chronic Disease, In the News, Research, Stanford News, Transplants

Are donor hearts getting wasted?

Are donor hearts getting wasted?

heart choiceI wrote a press release recently on a study that showed a high percentage of donated hearts were not being used, raising concerns that some were getting wasted when they could be used to save lives. This made me curious about the process of just how a donor heart, which ideally has about a two-hour window before it gets transplanted to a patient with heart failure, gets matched.

The result is a Stanford Medicine magazine story titled “Heart Choices” that describes this process, the tough decisions that family members make when a loved one donates a heart, and the excruciating waiting that patients in need of a new heart go through.

Most importantly the article asks the question: Should more “high-risk” donor hearts be used? An estimated 20,000 people across the country are waiting for new hearts, and only a few thousand transplants happen on average per year. My story explains the dilemma:

The general assumption is that there simply are not enough donor hearts available to meet a growing demand. But new research is questioning that assumption. Some researchers and surgeons claim that thousands of donor hearts that could be used are turned away each year. The hearts are considered marginal because they come from older, sicker or riskier donors, but many argue they are safe for transplant, and could be saving lives.

“As patients wait longer, they often get sicker, and we often lose patients,” says Stanford cardiologist Kiran Khush, MD, whose research reports that 65 percent of available heart donations are discarded because of stringent acceptance criteria. Yet the criteria have not been critically evaluated, she says. “Increasing the supply of donor hearts is, of course, a great concern of mine.”

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Cardiovascular Medicine, Chronic Disease, Imaging, Research, Stanford News, Technology

DNA damage seen after CT scanning, study shows

DNA damage seen after CT scanning, study shows

16288548276_e155ec8843_zUsing new laboratory techniques, Stanford scientists have been able to get a closer look at what happens inside the cells of patients undergoing medical imaging techniques. In a study published today, their research clearly shows that there is cellular damage in heart patients after CT scanning.

The researchers explained to me in interviews for a press release on the study that this doesn’t link CT scans to cancer. But as Patricia Nguyen, MD, lead author said in the release, it is further indication for caution:

“Whether or not this (cellular damage) causes cancer or any negative effect to the patient is still not clear, but these results should encourage physicians toward adhering to dose reduction strategies.”

Due to an explosion in the use CT scans for heart patients over the past decade, public health concerns have been raised over whether there might be a causal link with cancer. But until now, little has been known about exactly what happens at a cellular level when patients undergo CT scanning, a type of medical imaging which exposes them to low-dose radiation. This study took advantage of new laboratory techniques that made it possible to look inside cells of patients after they underwent CT scanning. As Nguyen explained in my release:

“Because we don’t know much about the effects of low-dose radiation — all we know is about high doses from atomic bomb blast survivors — we just assume it’s directly proportional to the dose. We wanted to see what really happens at the cellular level.”

Researchers examined the blood of 67 patients undergoing cardiac CT angiography using such techniques as whole-genome sequencing and flow cytometery to measure biomarkers of DNA damage. The results:

… showed an increase in DNA damage and cell death, as well as increased expression of genes involved in cell repair and death, the study said. Although most cells damaged by the scan were repaired, a small percentage of the cells died, the study said.

“These findings raise the possibility that radiation exposure from cardiac CT angiography may cause DNA damage that can lead to mutations if damaged cells are not repaired or eliminated properly,” the study said.

Photo by frankieleon

Big data, BigDataMed15, Chronic Disease, Videos

Discussing patient participation in medical research: “We had to take this into our own hands”

Discussing patient participation in medical research: "We had to take this into our own hands"

Keynote talks and presentations from the 2015 Big Data in Biomedicine conference at Stanford are now available on the Stanford YouTube channel. To continue the discussion of how big data can be harnessed to improve the practice of medicine and enhance human health, we’re featuring a selection of the videos on Scope.

Two days before Christmas in 1994, Sharon Terry’s two young children were diagnosed with pseudoxanthoma elasticum (PXE), a rare condition that causes calcium and other minerals to be deposited in the body’s tissue. As Terry told the audience at the 2015 Big Data in Biomedicine conference, “[My husband and I] quickly learned that we, in fact, had to take this into our own hands, like many parents have done before us and many parents have done after us.” Despite not having a science background, Terry co-discovered the gene associated with PXE and created a diagnostic test for the disease; over the years, she has conducted clinical trials and authored 140 peer-reviewed papers, of which 30 are PXE clinical studies.

In the above video, Terry recounts the inspiring journey of how she and her husband worked for two decades with scientists worldwide to advance research on PXE in hopes of developing therapeutic treatments. She also explains her current work as president and CEO of Genetic Alliance to help individuals, families and communities participate in scientific research and promote the sharing of health data to improve health.

Previously: A look at aging and longevity in this “unprecedented” time in history, Parents turn to data after son is diagnosed with ultra-rare disease, Nobel Laureate Michael Levitt explains why “biology is information rich” at Big Data in Biomedicine, At Big Data in Biomedicine, Stanford’s Lloyd Minor focuses on precision health and  Experts at Big Data in Biomedicine: Bigger, better datasets and technology will benefit patients

Chronic Disease, Research, Stanford News, Videos

“This is probably one of the last major diseases we know nothing about”: A look at CFS

“This is probably one of the last major diseases we know nothing about": A look at CFS

Chronic fatigue syndrome affects between 836,000 to 2.5 million people in the United States, and 25 percent of them are confined to their bed. Earlier this year, the Institute of Medicine released a report acknowledging that chronic fatigue syndrome is a real and serious disease and renaming the disorder “systemic exertion intolerance disease” to better reflect its key symptoms.

The current issue of Palo Alto Weekly focuses on the disease and tells the story of local resident Whitney Dafoe, a promising 31-year-old photographer whose career was cut short when he began experiencing crushing fatigue, dizziness, gastrointestinal problems and dramatic weight loss:

Dafoe’s disease has progressed to the point that he cannot talk, read or use the Internet. His joint pain became so severe some time ago that he could no longer walk and needed to use a wheel chair. Now he rarely gets out of bed. On a good day, he’ll show his gratitude by pointing to his heart, his mother said.

His parents have stuck a few brief messages he’s scrawled on notes to the door frame outside his room. The yellow squares of paper are the only way he can communicate these days.

“I don’t know what to say. I just feel pretty hopeless about all this. I never get a break from bad things,” he wrote on one note.

“It’s so hard not being able to take care of my stuff. The feeling of helplessness it gives me is so stressful,” another states.

Dafoe, who is also featured in the above video, is the son of Ronald Davis, PhD, a genetics researcher who was instrumental in the Human Genome Project and directs Stanford’s Chronic Fatigue Syndrome Research Center. A second article details how Davis and colleagues are working to better understand the debilitating disease and develop diagnostic tests and treatments:

Davis and his team plan to use technologies developed for the Human Genome Project to sequence the entire genome of chronic fatigue patients, including 1,600 mitochondrial genes, more than 20,000 other genes and control regions that regulate genes. They hope to identify proteins that are found in immune cells, blood and spinal fluid; search for infectious agents in blood, bone marrow, spinal fluid and saliva and changes to gastrointestinal tract flora; and find evidence of autoimmune responses. The research could reveal DNA sequences that are altered in chronic fatigue patients.

The detailed approach is more comprehensive than that of other research, which has only looked at a fraction of the genes, according to the center’s website.

Davis is working with numerous collaborators across many fields, hoping the collaborative effort will attract the best minds in their fields.

“This is probably one of the last major diseases we know nothing about. This is your last chance to be a pioneer,” he said.

Previously: ME/CFS/SEID: It goes by many aliases, but its blood-chemistry signature is a giveawayChronic fatigue syndrome gets more respect (and a new name), Studies on ME/chronic fatigue syndrome continue to grab headlines, spur conversation, Unbroken: A chronic fatigue syndrome patient’s long road to recovery and Deciphering the puzzle of chronic fatigue syndrome

Chronic Disease, Patient Care, Pediatrics

On growing up with chronic illness: “I’ve never felt like I had ownership over my body”

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 a patient with Crohn’s disease.

woman-body-144220_1280

As a child who was diagnosed with Crohn’s disease at the age of nine, I learned to give my power over to my doctors and parents. I never questioned the constant prodding, the pain that I had to endure from different tests and exams, the dozen pills that I swallowed down each day, because after all, I was to trust doctors and adults. They knew what was best for me. They knew what was best for my body. And of course, this is true – but only to an extent. Please hear me out.

In no way am I undermining the miraculous work that medical professionals do each and every day. I am beyond grateful for the way that my disease was handled, I was given a fairly normal childhood because of the way my medical team was able to manage my disease. And on top of that, I have the most incredible parents who handled my disease beautifully; they allowed me to feel supported, loved and taken care of. Honestly, I just had to show up for doctor appointments, swallow pills, and be a kid. I left the details up to the adults.

But then I started growing up. High school, boys, and school dances became my new normal. I lost my power at the age of 17 when I was date raped. Although I attempted to say “no” and stick up for myself, I ultimately didn’t know how to confidently do this. I didn’t know how to command respect because I was so used to never being asked to say “yes.” Unfortunately, this situation snowballed into another date rape and ultimately a suicide attempt. I truly felt detached from my body. It wasn’t mine. I didn’t know how to handle it. I despised it. It was the source of so much pain. And so, I wanted to leave it.

I never connected my inability to stick up for myself with being a child of chronic disease until the last couple of years. As I reflect back, the correlation is so clear. I never was taught to question what my doctors did to my body. I cannot recall being asked if it was “okay” to be examined or to be touched. If I was in a doctor’s office, it was just assumed and expected. To be clear: There was absolutely never anything inappropriate that happened to me in my doctors’ care. I think the only reason that the perceived lack of power on my side affected me is because I was a child, and I didn’t have the capability to differentiate the way I handled my body in the care of a doctor versus the hands of a teenage boy.

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