Friday, April 25, 2008

Working while chronically ill

April 21, 2008, 7:17 pm

By Marci Alboher
Rosalind Joffe

In researching my column on how small business owners deal with health insurance, I talked to Rosalind Joffe, an executivecoach who specializes in helping people who have chronic illnesses. Ms. Joffe has suffered from multiple sclerosis and ulcerative colitis, both of which have stabilized with treatment — the removal of her colon for the colitis, and the medication, Avonex, for her MS. Prior to getting sick, Ms. Joffe had two successful careers, first as a multimedia producer and then as a professor of communications at Boston University. She became a coach because she wanted a job that she could do from home and that would be flexible enough to allow her to modify her schedule whenever she had a bad day. She credits her ability to make that career change to the fact that her husband had a good health insurance policy that could cover her as well — yet another example of health insurance affecting a career choice.

According to Ms. Joffe, and to research conducted by the National Organization on Disability, only 32 percent of Americans with disabilities (ages 18 to 64) are working, but two thirds of those unemployed would rather be working. Ms. Joffe says she encourages people with chronic illnesses to figure out how they can work rather than go on disability. Research, she says, shows that remaining employed can actually lead to better health, not to mention improving self-esteem and maintaining social contacts.

You can learn more about Ms. Joffe’s work at cicoach.com, which provides resources for people with chronic illnesses and KeepWorkingGirlfriend.com a blog that promotes a forthcoming book for women suffering from autoimmune diseases, written by Ms. Joffe and Joan Friedlander. Both the site and the blog have extensive information and links to all kinds of resources, books, blogs and support organizations.

Ms Joffe is at her best when she poses questions to think about, as in this post about how to know if self-employment is a good fit for you. If you’re hungry for more than what is on her sites, Ms. Joffe, like a smart entrepreneur, offers a lot of extra information in newsletters and pdf workbooks and in the book, “Women, Work, And Autoimmune Disease,” available for preordering on Amazon.com.

Monday, April 14, 2008

Muscle weakness found in some autistic children

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SUNDAY, April 13 (HealthDay News) -- New research suggests that muscle weakness in a child with autism may point to an underlying genetic defect that's causing mitochondrial disease, which means the muscles don't get the energy they need.

Conversely, it's possible that the mitochondrial disease may also play a role in the development of autism, perhaps by preventing the brain from getting the energy it needs to perform properly, the researchers noted.

"In large studies of kids with autism, about 20 percent have markers of mitochondrial disease in the blood," explained Dr. John Shoffner, an associate professor of biology at Georgia State University and president of Medical Neurogenetics.

Shoffner recently completely a retrospective analysis of 37 children with autism spectrum disorders and found that 65 percent of these children -- children who had been referred to him because their doctors suspected additional problems -- had mitochondrial defects.
He was expected to present the findings April 13 at the American Academy of Neurology's annual meeting, in Chicago.

Mitochondria are found in every cell of the body, with the exception of red blood cells, according to the United Mitochondrial Disease Foundation (UMDF). Mitochondria are vital to survival, because they make oxygen available to cells and metabolize food into energy for cells to thrive. Defects in mitochondria can lead to cell injury, or even cell death, according to UMDF.
Symptoms of mitochondrial disease depend on which body system is affected but may include muscle weakness, loss of muscle control, poor growth, heart disease, diabetes, developmental delays, an increased risk of infection and more.

Shoffner said that the mitochondrial energy production system is the only one in the body that requires two genomes to work -- genes inherited from both the mother and the father, and genes exclusively from the mother. "To make this system work, it requires a lot of genes. Hence the opportunity for lots of problems," said Shoffner, who added that there are several hundred known mitochondrial disorders.

Twenty-four (65 percent) of the children included in this study had genetic defects in their skeletal muscles. However, that doesn't mean that 65 percent of children with autism likely have mitochondrial disease. This was a select population of kids with autism, ones that had specifically been referred, because their doctors suspected a problem.

But, Shoffner pointed out that as many as one in five youngsters with autism spectrum disorders have shown signs of mitochondrial disease.

"If you're talking about 20 percent of kids with autism, that's a whole lot of children, and may represent an important segment of the autism spectrum disorder population. And we may be getting a foothold into the underlying cause of autism spectrum disorders," he said, adding, "This is a really important step forward that lets us put effort into understanding the mechanisms of disease."

"This study is a call to action. We need to know what is the real prevalence of mitochondrial conditions in children with autism," said Geraldine Dawson, chief science officer for Autism Speaks. "The more we can identify these subgroups of kids, the more we're going to parse apart the many forms of autism. This gives us clues to etiology."

"If we find that mitochondrial disease is a prevalent condition, having a better understanding of the kinds of symptoms that children may show if they have it might be helpful for parents," she said.

Shoffner said these findings may also open up new avenues of research into potentially more effective treatments for the future.HealthDayCopyright (c) 2008 ScoutNews, LLC.

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Thursday, April 3, 2008

State-by-State Health Care Performance


AHRQ'S 2007 State Snapshots Provide Broader Portraits of State-by-State Health Care Performance

Press Release Date: March 26, 2008

An annual analysis to help health leaders identify areas of health care delivery that need quality improvement now includes important information such as each State's rate of obesity, health insurance coverage, mental illness and the number of specialist doctors.
Those and other measures—called "State contextual factors"—are part of the 2007 State Snapshots released today by the federal Agency for Healthcare Research and Quality (AHRQ). The updated State Snapshots Web tool also tracks States' progress toward reaching government-set health goals for 2010.
"This year's State Snapshots do more than illustrate the wide variations in health care quality among States," said AHRQ Director Carolyn M. Clancy, M.D. "They also show a handful of the important challenges that states face as they work to improve the quality of care."
As in previous years, the 51 State Snapshots—every State plus Washington, D.C.—summarize health care quality in three dimensions: type of care (such as preventive, acute or chronic care), setting of care (such as nursing homes or hospitals), and by clinical areas (such as care for patients with cancer or diabetes). The evaluations are expressed in simple, five-color "performance meter" illustrations that rate performance from "very weak" to "very strong." Users may explore whether a State has improved or worsened compared to other states in several areas of health care delivery.
Users can get more detailed portraits of each state's performance by exploring the State Snapshots' 149 separate measures of quality. Those measures range from preventing pressure sores to screening for diabetes-related foot problems to giving recommended care to pneumonia patients.
Finally, the State Snapshots provide State rankings for 15 "selected measures." These rankings show that no State does well or poorly in all areas. Texas, for example, ranked 4th best at minimizing nursing home patients' pressure sores but 41st on vaccinating older people against pneumonia. Ohio ranked 7th for its high percentage of pregnant women who received prenatal care but 46th for its high rate of breast cancer deaths. New Mexico ranked 4th best on improving the mobility of nursing home residents but 50th for its low number of heart attack patients who received the right medications at hospital discharge.
The data in this year's State Snapshots are drawn from the 2007 National Healthcare Quality Report. That report, released March 3 and available at www.ahrq.gov/qual/qrdr07.htm, provides a national portrait of health care quality. It showed the quality of health care improved by an average 2.3 percent a year between 1994 and 2005, a rate that reflects some important advances but points to an overall slowing in quality gains.
Highlights of the 2007 State Snapshots include:
State Contextual Factors: This new feature provides demographics that show what percentage of each state is poor, uninsured, enrolled in Medicaid, age 65 or older, black, Hispanic and lacking a college degree. It also provides health information showing what portion of each state's population is overweight, at risk for stroke and heart disease or reports poor mental health. Lastly, this feature shows how states rank when it comes to hospitalization rates, the number of people enrolled in HMOs and the number of available physician specialists.
Focus on Healthy People 2010: This new feature shows each state's progress toward meeting federal health goals established by the Healthy People 2010 initiative. Charts show how close states have come to reaching two dozen goals ranging from lowering the number of lung cancer deaths to increasing the percentage of people who had their cholesterol checked in the past 5 years.
State Rankings for Selected Measures: This section updates state rankings on 15 important quality measures, such as child vaccination rates, breast cancer death rates, the percentage of nursing home patients improving mobility and the portion of Medicare patients who received clear and respectful advice from their doctor.
Focus on Diabetes: This section offers several evaluations of diabetes care, including what portion of diabetes patients get recommended tests and how many patients are hospitalized for diabetes-related complications. The feature also estimates how much money each state might save by lowering average blood sugar levels.
Focus on Clinical Preventive Services: This feature shows how each state is doing on disease-prevention strategies, such as providing pneumonia or flu vaccines, checking cholesterol levels or advising smokers to quit.
AHRQ's annual State Snapshots is based on data drawn from more than 30 sources, including government surveys, health care facilities and health care organizations. To access this year's State Snapshots tool, go to: http://statesnapshots.ahrq.gov/snaps07/index.jsp.
Internet Citation:
AHRQ'S 2007 State Snapshots Provide Broader Portraits of State-by-State Health Care Performance. Press Release, March 26, 2008. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/press/pr2008/snapshot07pr.htm