Stories about: chronic disease

As life expectancy with cystic fibrosis grows, so does quality of life

lungs-x-ray-shutterstock-croppedIn the not-too-distant past, the medical community wasn’t overly concerned about the quality of life of adults with cystic fibrosis (CF). It’s not that doctors were callous; the life expectancy for the disease was just so low that the vast majority of CF patients never lived to see adulthood. But improved understanding and management of the disease in the past 30 years has changed that.

On average patients with CF are living into their late 30s, up 85 percent from the early 1980s. Today, more than 40 percent of all CF patients in America are more than 18 years old.

But data on the quality of life these patients enjoy have been seriously lacking. To fill this void, researchers from the Cystic Fibrosis Center at Boston Children’s Hospital and nine other CF centers across America conducted one of the first studies to look at quality of life for adult CF patients.

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Out of the fire, into the pan: Lessons on managing chronic care in developing countries

Food insecurity is a major problem for diabetic patients at the Kay Mackensen clinic in Haiti where Julia Von Oettingen, MD (top center) serves as medical director.
Food insecurity is a major problem for diabetic patients at the Kay Mackensen clinic in Haiti where Julia Von Oettingen, MD (top center) serves as medical director.
In parts of the developing world, especially remote, rural areas, it’s not unusual for people with diabetes to ignore their symptoms until they’ve collapsed and need immediate care. By the time they see a doctor, their blood sugar levels might be so high as to cause diabetic ketoacidosis (DKA), where the body starts breaking down fats and proteins, turning their blood acidic and leaving them extremely dehydrated.

For many, it won’t be the first such episode. But for some, it can be the last.

Stories like this are increasingly common across large swaths of the developing world—as Diane Stafford, MD, an endocrinologist from Boston Children’s Hospital, discovered when she traveled to Kigali, Rwanda, through the Human Resources for Health program.

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Web platform tracks ADHD patients in real time

It was a chance encounter. Eugenia Chan, MD, MPH, and Eric Fleegler, MD, MPH, both worked at Boston Children’s Hospital, and had met one another once or twice, but only in passing.

Running into each other at a conference, they fell to chatting. Chan, a pediatrician in Developmental Medicine, was looking for a way to measure how well patients with attention deficit hyperactivity disorder were responding to their medications. Fleegler, an emergency physician and health services researcher, described an online software program he developed to screen patients for health-related social problems and connect them with relevant services.

Two years later, Chan and Fleegler launched ICISS, the Integrated Clinical Information Sharing System, which monitors patients with ADHD and their changing medication responses.

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More sick children are surviving. Are they ready for adult medicine?

(image: Sandyhombre/Flickr)

In the past few decades, what used to be considered medical miracles have become expected and everyday. More children are surviving prematurity, even extreme prematurity. Congenital heart defects are routinely repaired, leukemia has largely become curable, and conditions like sickle cell disease and cystic fibrosis have become manageable chronic conditions with a greatly increased life expectancy.

That’s created a new problem: young adults entering an adult healthcare system that isn’t ready for them. Many have cognitive disabilities or emerging coexisting conditions like obesity, asthma and type 2 diabetes. Many are used to having their care managed by their parents.

A national study of patients aged 19 to 23 with special health care needs – the first to draw on interviews of young adults themselves – finds many of them ill-prepared to assume lifelong responsibility for their health

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