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Chronic kidney disease affects 26 million people in the United States.

Challenging prevailing wisdom that only children with end-stage kidney disease suffer physical, social, emotional and educational setbacks from their disease, research led by Johns Hopkins Children's Center shows that even mild to moderate kidney disease may seriously diminish a child's quality of life.

The findings, reported in the February issue of Pediatrics, suggest that earlier attention to quality-of-life issues in children with chronic kidney disease is needed.

"Even mild and moderate declines in kidney function may lead to serious physical, emotional, intellectual and social challenges," says lead investigator Arlene Gerson, Ph.D., a pediatric psychologist at Hopkins Children's.

Kidney Disease Screening is Needed

"What this means is we should be thinking about screening children for these challenges and intervening earlier than we once thought."

Recently diagnosed children who report learning problems may benefit from help before grades drop, researchers say, noting that children with chronic diseases currently do not qualify for special education until their scores decline dramatically.

Links Between Kidney Function and Quality of Life

In their study of 402 children, ages 2 to 16, with mild-to-moderate kidney disease, researchers analyzed the link between kidney function, disease severity, age of onset and disease duration, on the one hand, and physical, emotional, psychological and school functioning on the other.

The researchers also compared quality-of-life outcomes between healthy children and children with early-stage kidney disease. Children with mild-to-moderate kidney disease and their parents reported worse overall outcomes on standard quality-of-life questionnaires and worse outcomes on all quality-of-life factors.

Specifically, children with early-stage kidney disease scored on average 75 out of 100 on quality-of-life measures, compared to 83 out of 100 for healthy children. The difference was especially pronounced in school functioning, where children with early-stage kidney disease scored 64 out 100, compared to 80 out of 100 for healthy children.

How Children Cope with Kidney Disease

The study also found that the younger the child at the time of the diagnosis and the longer the child lived with kidney disease, the better the overall quality of life, a surprising finding, suggesting that as time passes children learn to cope better with their condition, the researchers say.

The researchers found that children with impaired growth and shorter stature, a common effect of their disease, had worse overall quality of life and poorer physical functioning, an indicator of the importance of early treatment.

Treatments for Children's Kidney Disease

"Timely and individually tailored treatment, be it with nutrition, salt supplements or growth hormones, if needed, can make a big difference. We cannot overemphasize the importance of early intervention in children with early stages of chronic kidney disease," says senior investigator Susan Furth, M.D. Ph.D., a pediatric nephrologist at Hopkins Children's.

The research is part of an ongoing 57-center study funded by the National Institutes of Health to study chronic kidney disease in children.

Surgeon General Declares Thanksgiving as "Family Health History Day"

Surgeon General Regina M. Benjamin, today declared Thanksgiving Day 2009 to be the nation's sixth annual "Family Health History Day," when families can make plans for gathering their health history, with the aid of the My Family Health Portrait Web site.

"An important first step in preventing illness is learning about health conditions in our families that may put us at risk for inheriting diseases such as diabetes, heart disease, cancer, Alzheimer's, mental illness, and many others," said Dr. Benjamin.  "Discussing family health information with each other can often uncover things you never knew, simply because no one ever asked."

Your family health history can help direct your doctor, physician assistant, or nurse practitioner to specific tests or treatment plans you may need to take to prevent or delay disease.  For example, you can be tested for a heart condition or cancer because it's in your family history.

You can find the Office of the Surgeon General's
My Family Health Portrait Web site at
https://familyhistory.hhs.gov.


Once you have entered family health information, the on-line portal assembles the information into a medical "family tree" format that is useful for health care clinicians. This tool is free for anyone to use.

Filling out the "My Family Health Portrait" usually takes about 20 minutes.  You can share the Web portal with your family members to help fill in missing information. The portal also allows relatives to create their own family health history by adding to information already entered by another family member.

After filling in the information, you can save the information to your computer and -- if you want to -- share it with your doctor.  The Surgeon General's Web site does not retain the information once the tool has been used to assemble it.

"On this Thanksgiving holiday, I hope you and your family will take a few minutes to create a family health portrait," Dr. Benjamin said.   "Learning your family's health history is a valuable investment to make in your health and your family's health."

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