Saturday, August 28, 2010
I’m pretty sure web 2.0, the new generation of web services, will (and already is playing) play an important role in the future of medicine. These web tools, expert-based community sites, medical blogs and wikis can ease the work of physicians, scientists, medical students or medical librarians and can help patients how to find reliable medical information online.
Kiran didn’t seem like the type of kid parents should worry about. “He was the easy one,” his father, Raghu, a physician, says. “He always wanted to please.” Unlike other children in his suburban St. Louis preschool, Kiran (a nickname his parents asked me to use to protect his identity) rarely disobeyed or acted out. If he dawdled or didn’t listen, Raghu (also a nickname) had only to count to five before Kiran hastened to tie his shoes or put the toys away. He was kind to other children; if a classmate cried, Kiran immediately approached. “Our little empath!” his parents proudly called him.
But there were worrisome signs. For one thing, unlike your typical joyful and carefree 4-year-old, Kiran didn’t have a lot of fun. “He wasn’t running around, bouncing about, battling to get to the top of the slide like other kids,” Raghu notes. Kiran’s mother, Elizabeth (her middle name), an engineer, recalls constant refrains of “Nothing is fun; I’m bored.” When Raghu and Elizabeth reminded a downbeat Kiran of their coming trip to Disney World, Kiran responded: “Mickey lies. Dreams don’t come true.”
Over time, especially in comparison with Kiran’s even-keeled younger sister, it became apparent that guilt and worry infused Kiran’s thoughts. “We had to be really careful when we told him he did something wrong, because he internalized it quickly,” Raghu says. He was also easily frustrated. He wouldn’t dare count aloud until he had perfected getting to 10. Puzzles drove him nuts. After toying with a new set of Legos, he told his father, “I can’t do Legos.” He then roundly declared: “I will never do them. I am not a Legos person. You should take them away.”
One weekend when he was 4, Kiran carried his blanket around as his mother ferried him from one child-friendly place to the next, trying to divert him. But even at St. Louis’s children’s museum, he was listless and leaned against the wall. When they got home, he lay down and said he couldn’t remember anything fun about the whole day. He was “draggy and superwhiny and seeming like he was in pain.” Elizabeth remembers thinking, Something is wrong with this kid.
After talks with the director of Kiran’s preschool, who was similarly troubled by his behavior, and a round of medical Googling, Kiran’s parents took him to see a child psychiatrist. In the winter of 2009, when Kiran was 5, his parents were told that he had preschool depression, sometimes referred to as “early-onset depression.” He was entered into a research study at the Early Emotional Development Program at Washington University Medical School in St. Louis, which tracks the diagnosis of preschool depression and the treatment of children like Kiran. “It was painful,” Elizabeth says, “but also a relief to have professionals confirm that, yes, he has had a depressive episode. It’s real.”
Is it really possible to diagnose such a grown-up affliction in such a young child? And is diagnosing clinical depression in a preschooler a good idea, or are children that young too immature, too changeable, too temperamental to be laden with such a momentous label? Preschool depression may be a legitimate ailment, one that could gain traction with parents in the way that attention deficit hyperactivity disorder (A.D.H.D.) and oppositional defiant disorder (O.D.D.) — afflictions few people heard of 30 years ago — have entered the what-to-worry-about lexicon. But when the rate of development among children varies so widely and burgeoning personalities are still in flux, how can we know at what point a child crosses the line from altogether unremarkable to somewhat different to clinically disordered? Just how early can depression begin?
The answer, according to recent research, seems to be earlier than expected. Today a number of child psychiatrists and developmental psychologists say depression can surface in children as young as 2 or 3. “The idea is very threatening,” says Joan Luby, a professor of child psychiatry at Washington University School of Medicine, who gave Kiran his diagnosis and whose research on preschool depression has often met with resistance. “In my 20 years of research, it’s been slowly eroding,” Luby says of that resistance. “But some hard-core scientists still brush the idea off as mushy or psychobabble, and laypeople think the idea is ridiculous.”
For adults who have known depression, however, the prospect of early diagnosis makes sense. Kiran’s mother had what she now recognizes was childhood depression. “There were definite signs throughout my grade-school years,” she says. Had therapy been available to her then, she imagines that she would have leapt at the chance. “My parents knew my behavior wasn’t right, but they really didn’t know what to do.”
Medicine 2.0'10 (Maastricht, NL) - World Congress on Social Media in Health, Medicine, and Biomedical Research
Medicine 2.0 is the annual open, international conference on Web 2.0 applications in health and medicine, also known as the World Congress on Social Networking and Web 2.0 Applications in Medicine, Health, Health Care, and Biomedical Research.
The congress is organized and co-sponsored by the Journal of Medical Internet Research, the International Medical Informatics Association, the Centre for Global eHealth Innovation, CHIRAD, and a number of other sponsoring organizations.
This conference distinguishes itself from "Health 2.0" tradeshows by having an academic form and focus, with an open call for presentations, published proceedings and peer-reviewed abstracts (although there is also a non-peer reviewed practice and business track), and being the only conference in this field which has a global perspective and an international audience (last year there were participants from 18 countries).
An academic approach to the topic also means that we aim to look "beyond the health 2.0 hype", trying to identify the evidence on what works and what doesn't, and have open and honest discussions.
Friday, August 27, 2010
• managing your symptoms
• managing fear, anger, frustration and depression
• establishing good exercise and nutrition routines
• practicing relaxation techniques
• managing medication
• dealing with fatigue
• communicating with your health care team and loved ones
• evaluating treatment options
Health librarians are the acknowledged experts in information retrieval, but we need better ways to share this expertise with each other - a major reason why this wiki has come into being. Our objective is to build a health sciences librarianship wiki with an international perspective, but also to emphasize issues affecting practice in Canada. For example, we will focus on expert searching to support the development of systematic reviews in medicine, and searching for the grey literature. (Here are some other subjects covered.) The final project for our students will be to work solo, or in groups, to write a major paper for the field; we encourage the use of this wiki to brainstorm ideas. By providing a forum for best practice for health librarians, and other information professionals, more collaborative work can be initiated. LIS students are encouraged to add, create or edit entries - and, not just our students (any taking health libraries courses in other jurisdictions). We believe this open-model will more accurately reflect the "wisdom of the field" and bring significant value to the wiki's knowledge-base.
Dr Clive Seale, a professor in the Centre for Health Sciences at Barts and The London School of Medicine and Dentistry, Queen Mary University of London, wrote about the findings in a paper published online 23 August in the Journal of Medical Ethics.
Data for the study came from a postal survey of UK doctors working in a range of specialisms where end of life decisions are most likely to occur, such as care of the elderly, palliative care, intensive care, certain hospital specialties, and general practice.
The survey asked participants questions about their own faith and religious beliefs, ethnicity, and views on assisted dying and euthanasia. It also asked them a series of questions about the care of their last patient who died (if relevant), including whether they had given them continuous deep sedation until death, and if they had talked to the patient about decisions judged likely to shorten life.
3,733 doctors responded to the survey (42 per cent of the total invited). Of these, 2,933 answered questions on the care of a patient who died.
The results showed that:
- Specialists in care of the elderly were more likely to be Hindu or Muslim.
- In contrast, specialists in palliative care were more likely to be Christian or white and to agree to the question asking them if they were "religious".
- However, overall, white doctors, the largest ethnic group, were the least likely to report having strong religious beliefs.
- Doctors with strong religious beliefs were less likely to discuss treatments judged likely to end life with their patients.
- On the whole, ethnicity was not linked to rates of reporting ethically controversial decisions, but it was linked to support for assisted dying or euthanasia legislation.
- There was a strong link between specialty and reporting decisions that were expected or partly intended to hasten the end of a sick patient's life.
- Hospital specialists were nearly 10 times more likely to report such decisions than palliative care doctors.
- However, doctors who said they were "extremely" or "very" non-religious were nearly twice as likely to report having made these kinds of decisions than peers who described themselves as having religious beliefs, and this was regardless of specialism.
- There were only a few cases of the most religious doctors having made such decisions (ie expected or partly intended to hasten end of life), but those that did were also signficantly less likely to have discussed them with their patients than their less religious peers.
- There was a similar pattern regarding support for assisted dying and euthanasia legislation.
- Palliative care specialists and those with strong religious beliefs were the most strongly opposed to such legislation.
- Asian and white doctors were less opposed than doctors from other ethnic groups.
Some medical organizations and charities have expressed concern about the study's findings, saying that doctors should put patient needs before their own beliefs.
Dr Ann McPherson CBE, a patron of Dignity in Dying, a charity that promotes the idea that people should have greater choice, control and access to high quality care at the end of life, said in a statement that the study results are a concern and that:
"Important decisions, on withholding and withdrawing treatment and/or on levels of pain relief, should always where possible be taken in conjunction with the patient, whose views are of paramount importance."
She said the research shows there is still some way to go before we reach the standard set by the recent end-of-life decision making guidelines from the General Medical Council (GMC) , and "the fact that some doctors are not discussing possible options at the end of life with their patients on account of their religious beliefs is deeply troubling".
"Whilst entitled to their beliefs, doctors should not let them come in the way of providing patient centred care at the end of life," she urged.
The British Medical Association also said doctors should not allow their beliefs to influence decisions about patient care, which should be taken on the basis of individual assessment and include discussions with the patient and close family, if possible and appropriate.
"End-of-life decisions must always be made in the best interests of patients," said the BMA, according to a BBC report.
Tuesday, August 24, 2010
A virus called XMRC may be linked to chronic fatigue syndrome (CFS), a study shows.
The full name of the virus is xenotropic murine leukemia virus-related virus. It is part of a family of viruses known as murine leukemia viruses (MLV), which is a type of retrovirus known to cause cancer in mice.
The new study, published in the Proceedings of the National Academy of Sciences, conflicts with some earlier studies. Several U.S. studies, including a recent report from the CDC and research done in the U.K. and the Netherlands, found no evidence XMRV or other viruses in this family in the blood of people with CFS.
The new study shows that 86.5% of 37 people with CFS had evidence of this virus in their blood, as did 6.8% healthy blood donors. These findings back up a recent report by researchers at the Whitemore Peterson Institute in Reno, Nev., which showed similar results.
"There is a dramatic association with CFS, [but] we have not determined causality for this agent," said Harvey Alter, MD, chief of clinical studies and associate director for research in the department of transfusion medicine at the National Institutes of Health (NIH) Clinical Center in Bethesda, Md., at a news conference. "Other labs have not found this virus, so a dilemma at present is how to reconcile that some labs find the association and others do not."
"We think it is in the patient populations, not the lab testing [contamination causing a false-positive lab result], but the latter has not been completely ruled out," he says.
Steve Monroe, PhD, director of the division of high-consequence pathogens and pathology at the CDC, tells WebMD that the new study "raises as many questions as it answers and there are still a lot of things about this virus that we don't know."
Andrew L. Mason, an associate professor of medicine at the University of Alberta in Edmonton, Alberta, Canada, says it's time to act, not point fingers.
There have been several studies showing the presence of this virus in the blood of people with chronic fatigue syndrome and prostate cancer, but other studies have not found it.
"We don't know why that is," he says. "It is baffling, and we need to sort it out rather than ignore it. It's there. Does it cause disease? We don't know, but it's there and that needs to be investigated."
"There is only one way to prove or disprove XMRV's role and that is to do a proper study with antiviral drugs," Mason says. In an editorial accompanying the new study, he suggests studies that compare antiviral drugs with placebo or dummy pulls on viral load and CFS symptoms in affected individuals are now feasible.
An FDA panel of outside experts — including an FBI agent! — voted against expanding the use of Jazz Pharmaceuticals' narcolepsy drug to fibromyalgia, in part because of its potential as a street drug.
An illegal form of sodium oxybate is similar to the drug GHB, Dow Jones Newswires reports. As the NPR Shots Blog noted in the run-up to the meeting, GHB gained notoriety for its use as a date rape drug. Right now sodium oxybate is distributed for use against narcolepsy only under heavy restrictions, and while panel members agreed it seemed effective against fibromyalgia symptoms in some patients, they were concerned about the potential for its misuse.
TheStreet.com's Adam Feuerstein, who live-blogged (and ) the advisory panel's meeting, reported that an FBI agent was invited by the FDA to participate in the panel, presumably because of the questions about the drug's way-way-way-off-label potential. She and 19 others voted no on the critical question of whether the benefits of marketing the drug to treat fibromyalgia outweighed the risks. Two panelists voted yes. (The company, obviously, said at the meeting that it believes the benefits do outweigh the risks, DJN reports.)
The panel didn't shut the door forever on the drug, saying Jazz should keep working on it as a possible fibromyalgia therapy, DJN says. "While we are disappointed with the recommendation" of the committee, "we plan to work closely with FDA on the continuing review of our new drug application," said Bruce Cozadd, chairman and CEO of Jazz, in a statement. The company will "carefully consider" the committee's input as it "seeks to address the needs of fibromyalgia patients for new treatment options in a safe and reasonable way."
The concerns about potential abuse and misuse were highlighted in the documents the FDA itself released earlier this week, in advance of this meeting. Say it together with feeling, everyone: The FDA usually, but doesn't always, follows the advice of its advisory panels.
Legislators have begun to recognize the medical, humanitarian and economic value of helping terminally ill patients and their families navigate treatment options as they approach the end of life.
Last week, over the objections of New York State's medical society, Gov. David A. Paterson signed into law a bill — the New York Palliative Care Information Act — requiring physicians who treat patients with a terminal illness or condition to offer them or their representatives information about prognosis and options for end-of-life care, including aggressive pain management and hospice careas well as the possibilities for further life-sustaining treatment.
The Medical Society of the State of New York objected, saying that the new law would intrude "unnecessarily upon the physician-patient relationship" and mandate "a legislatively designed standard of care."
A similar provision in the original federal health care overhaul proposal, which would have reimbursed doctors for the time it takes to have such conversations, was withdrawn when it was erroneously labeled by conservatives as a "death panel" option.
Also last week, a study in The New England Journal of Medicine reported that among 151 patients with newly diagnosed metastatic lung cancer, those who received palliative care, which is care focused on symptoms, along with standard cancer therapy had a better quality of life, experienced less depression, were less likely to receive aggressive end-of-life care and lived nearly three months longer than those who received cancer treatment alone.
The New York law was sponsored by Assemblyman Richard N. Gottfried and Senator Thomas K. Duane, both Democrats of Manhattan, at the request of Compassion and Choices of New York, an organization that seeks to improve end-of-life comfort care and reduce the agony often associated with dying in this era of costly can-do medicine.
The organization said the law addresses "a major concern for terminally ill patients and their families, who often face the most important decision of their lives — how to live their final days — without being informed of their legal rights and medical options." The law obligates health care providers to volunteer information on a complete menu of care options — if patients want to know about the options.