February 20, 2015

Delay in Newborn Testing Can Be Life-Threatening

For a couple of generations, the U.S. routinely has screened the blood of newborns to identify rare genetic conditions. But a recent editorial in USA Today reminded readers that too many delays at too many hospitals and labs are undermining the system’s ability to protect babies.

Noah Wilkerson was one newborn harmed by a health-care facility that took too long. He seemed to be healthy when he was born in 2009 at a hospital in Colorado Springs, Colo. His blood was drawn the next morning, but it took two weeks later before his sample was sent to the state lab, which didn’t process samples on weekends.

A day before the results came back, Noah died of a genetic disorder called MCAD deficiency. It’s a condition in which the body can’t convert some fats to energy. As explained in the original story about Noah in the Milwaukee Journal, a newborn with MCAD deficiency can appear perfectly healthy, but fatty acids are building up in the body, and soon there’s a metabolic crisis.

If the baby goes too long without eating, he or she can die suddenly or end up brain damaged.

But the real tragedy is that if the disorder is detected early, parents can treat it by feeding the child every two hours. “That's often all it takes for a baby with the condition to grow up and lead a normal, healthy life,” the Milwaukee Journal said.

“In an era when overnight delivery is routine,” the USA Today proclaimed, “it is inexcusable that many hospitals fail to get life-saving samples to labs within the three days recommended by the American College of Medical Genetics and Genomics. And inexcusable that state public health officials let them get away with it.”

That pretty much says it all.

About half of all state-run labs are closed on weekends and holidays, according to USA Today. So if your baby has the bad luck to be born late in the week, he or she is even more likely not to get test results in timely fashion.

Many hospitals simply ignore state requirements that samples be sent to labs with dispatch. Some hospitals wait to send samples until they can do so in bulk, and instead of using overnight delivery, as they might be required to do, they use the U.S. mail. States with the worst records, the newspaper said, are Arizona, Mississippi, South Carolina and Texas, where at least 15 in 100 hospitals take five or more days to get samples to labs.

But it’s not easy to find out who’s prompt and who’s dangerously tardy. Public officials in more than 20 states refused to release information to USA Today about hospital timeliness. “Secrecy denies expectant parents the ability to choose hospitals that are speedy and eliminates public pressure to force improvement,” the paper pointed out.

This is inexcusable. Although genetic disorders requiring immediate attention are rare, affecting about 1 in 4,000 newborns a year, if that baby is yours would you want to wait? There’s a reason babies are tested routinely, and the system should address the most vulnerable patients.

In 2012, the paper reported, only two states, Delaware and Iowa, met the speed standard — 99 in 100 of their hospitals delivered samples to labs within three days. Five years after Noah Wilkerson died, Colorado still doesn't process samples on weekends.

Long before you arrive at the hospital to deliver your baby, make sure you know what its newborn testing timeline is, and make sure the staff knows you’re keeping track. After you deliver, ask when the baby will be tested, and when the sample will be sent. Follow up and get confirmation that the promises have been kept.

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August 8, 2014

Emergency Surgery on the Weekend Is Riskier

If your child needs emergency surgery, here’s hoping it’s not on a weekend. A study published last month in The Journal of Pediatric Surgery suggests that kids undergoing emergency surgery on the weekend have more complications and deaths than if they’d had similar treatment during the week.

Researchers used a large national database, according to the New York Times, to compare 112,064 weekend surgeries on children younger than 18 with 327,393 such procedures on weekdays. All were coded as “emergencies,” and included appendectomies, brain shunts, hernias, bone fractures and abscess drainage.

Only about 1 in 100 had complications, and fewer than 1 in 1,000 died. But patients undergoing their surgeries on the weekend were:

  • 40% likelier to have an accidental puncture or cut;

  • 14% percent likelier to receive a transfusion; and

  • 63% likelier to die.

The lead author said that although mortality was low, over 20 years the number of weekend deaths would be about 50 more.

What can parents do about it? Obviously, you can't schedule when an accident is going to happen that requires surgery. But being aware that weekends carry higher complication rates can help make parents more alert to staffing issues and the need for vigilance by family members following an operation on a loved one. If something doesn't seem right, say so!

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August 16, 2013

Anesthesia Drug May Cause Brain Damage in Kids Undergoing Surgery

Drugs that fall under the category of “anesthesia” are powerful in their ability to separate you from the sensation of pain, and when you’re on the operating room table you wouldn’t want it any other way. But a recent study suggests that for youngsters, at least one of these drugs can have ominous effects.

As reported by AboutLawsuits.com, the drug ketamine can have a toxic effect on developing neurons that can cause learning and memory disorders as well as behavioral problems.

The association was described in a study published in the journal Neural Regeneration Research. It found that children younger than 3 who underwent surgery for an extended period or repeatedly got ketamine for multiple surgeries, exhibited learning and memory disorders and behavioral abnormalities when they reached school age.

The research, which was conducted on rats, not kids, found signs of neural toxicity and neuron death caused by the drug. In case there’s any doubt of ketamine’s power, it has been implicated as a “date rape” drug that leaves victims unable to move or remember what happened. It’s in the same class of drugs as PCP (phencyclidine), a dangerous “recreational” drug, and propofol, the drug that killed Michael Jackson.

Ketamine is a common anesthetic used in combination with a sedative. Apart from pediatric uses, it’s also common in veterinary medicine. Short term side effects sometimes include hallucinations and elevated blood pressure.

The Neural Regeneration Research scientists replicated results found in other studies. They expressed concern that ketamine might cause long-term neurological damage in children, prompting disabled learning and memory function. Dyslexia, hyperactivity and attention deficit hyperactivity disorder (ADHD) were mentioned specifically.

“Researchers,” said AboutLawsuits, “urge health-care providers and parents to weigh the risks with the benefits when considering using ketamine during surgery.”

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June 7, 2013

Well-Child Visits Help Keep Kids Out of the Hospital

We have been among the voices raised against the overuse and abuse of medical resources (here and here, for example), but sometimes medical attention is wholly appropriate even without symptoms or complaints.

When it comes to kids, according to a new study in the American Journal of Managed Care, regularly scheduled doctor visits even in the absence of a problem might well be wise. Young children who missed more than half of their recommended well-child visits, the study concludes, had as much as twice the risk of hospitalization compared with children who attended theirs.

Not surprising was the fact that kids with chronic conditions such as asthma and heart disease and who missed their recommended appointments had as much as three times the risk of being hospitalized as those with chronic conditions who were seen as recommended.

The study involved more than 20,000 children enrolled in Group Health Cooperative, a large health-care system in Seattle, from 1999 to 2006. The study followed the subjects from birth to age 3 1/2 or until their first hospital stay, whichever came first.

As quoted in a story on ScienceDaily.com, lead study author Dr. Jeffrey Tom, said, "Well-child visits are important because this is where children receive preventive immunizations and develop a relationship with their provider. These visits allow providers to identify health problems early and help to manage those problems so the children are less likely to end up in the hospital."

It goes without saying (although the study made it clear) that regular, preventive care for children with special needs and chronic conditions is even more important because of possible complications.

Most children in the study—3 in 4—attended at least 3 in 4 of their recommended visits. But this could be such a high percentage because Group Health coverage required no copayment for such visits. The authors acknowledge that the lack of a financial burden, even a small one, is an important incentive to maintaining a recommended medical visit schedule.

Four in 100 children in the study, and 9 in 100 of them with a chronic condition, were hospitalized. The two most common reasons for hospitalization in both groups, according to Science Daily, were pneumonia and asthma.

Children who missed more than half of their visits had as much as twice the risk of hospitalization compared with those who attended most of theirs. Children with chronic conditions who missed more than half of their visits had nearly twice to more than three times the risk of hospitalization compared with those who attended most of their visits.

During the study period, Group Health recommended nine well-child visits between birth and 3 1/2 years of age: the first at 3 to 5 days old, then at 1, 2, 4, 6, 10 and 15 months, and at 2 and 3 ½ years.

Although the study is very clear about the value of well-baby visits, a huge consideration is that the findings might not apply to all health systems. Group Health is an integrated health-care system, or one where care is well-coordinated as a person ages or a disorder progresses. Also, most of the study’s subjects attended most of their well-child visits and belong to affluent, well-educated families. Although some research studies can adjust for certain variables within the population they study, this one couldn’t adjust for income, education, race, or ethnicity.

And of course there is no absolute cause-and-effect conclusion that missing well-child visits increases the chances of hospitalization. But it’s pretty clear that there’s an important association. In addition to well-baby visits providing the opportunity for preventive care, Science Daily notes that parents who miss well-child visits are probably less likely to manage their kids' illnesses and follow treatment regimens, which could result in higher rates of hospitalization for the children.

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February 15, 2013

Hospital Readmission Rates for Children Mirror Those of Adults

Hospital readmissions—patients who have to check back into the hospital unexpectedly within 30 days of going home—have become an important factor in determining the quality of health care, particularly since Medicare is using that data to compensate and penalize hospital performance in its Hospital Readmissions Reduction Program.

But not much attention has been paid to hospital readmissions for children.

A new study, however, has found that trends seen in adult hospital readmissions also apply to pediatric readmissions. Published in the Journal of the American Medical Association (JAMA), the study found that 1 in 15 children discharged from a pediatric hospital is readmitted.

Researchers at Boston Children’s Hospital examined data from the National Association of Children’s Hospitals and Related Institutions for 72 large acute-care children’s hospitals between July 2009 and June 2010.

As reported on MedCityNews.com, the most common problems that returned young patients to the hospital were anemia/neutropenia (low white blood cell count), ventricular shunt procedures (to drain fluid around the brain) and sickle-cell crises. The incidence of readmission for those complications was comparable to the rate for adults readmitted for heart attack, heart failure and pneumonia.

So, many readmission trends seen in adults also are seen in children—similar rates related to certain conditions. Just like with adults, most pediatric patients are readmitted because they suffer from chronic diseases.

As noted in an editorial accompanying the JAMA study, most children are hospitalized only once in their lives—when they are born. Excluding newborns, every year about 3.6 million people are hospitalized, almost one-third of whom are children. But only a small percentage of children account for the majority of hospital admissions and costs—the ones with complicated medical problems.

Their larger use of health-care resources mirrors that of people on Medicare, whose chronic, complicated problems require more resources, and result in more readmissions.

Rates varied among the hospitals surveyed, and ranged from 4.6 to 8.5 in 100, depending on factors such as differences in hospital and follow-up care and family or community influences on health, the researchers said. Bottom line: There’s room for improvement, but it’s not just about hospitals doing a better job of treating inpatients and communicating with them on discharge, which is known as transition care.

“Community clinicians and organizations have a role to play as well,” said Dr. Mark Schuster, chief of general pediatrics at Boston Children’s Hospital in a statement released with the study. “Parents also need support in being able to stay home with their recuperating children.”

As noted by MedCityNews, this study found results similar to one that examined readmissions in VA hospitals in that a shorter hospital stay was associated with lower rates of readmission. And as you might expect, readmissions are higher for children with no insurance or with public coverage.

Critics of the Hospital Readmission Reductions Program say that you can’t use numbers alone to determine why some hospitals have higher readmission rates than others—some serve populations that lack primary care that might have addressed problems before they became serious enough to require hospitalization, so they’re treating a sicker patient population. Some are located in areas with higher trauma and crime rates, which mean they see more people with critical care issues.

The JAMA editorial acknowledged these complications as they apply to pediatric readmissions. “Until research can demonstrate that hospitals that have high pediatric readmissions are delivering suboptimal quality as opposed to caring for more children with complex social environments that contribute to readmission,” the authors wrote, “physicians and policy makers should not consider pediatric readmissions as a quality indicator: current research only supports it as a marker of health care utilization.”

“Are pediatric readmissions ready to debut as a showcase hospital quality measure?” the writers ask. “At this point, the answer is no. Or at least not yet.”

But that doesn’t mean that you can’t help your child get the best possible hospital care. Mindful of the factors that can skew pure numbers, you can find out how many hospitals rate on Medicare’s Hospital Compare site.

Another method of hospital review is described in our previous blog about performance ratings. Also, read my two-part newsletter about how to keep a loved one safe during hospitalization here and here.

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November 2, 2012

Off-Label Drugs Commonly Given to Intensive Care Patients

At the American Academy of Pediatrics conference last month, a researcher presented a paper that should give pause to anyone receiving or delivering treatment in a pediatric intensive care unit (PICU).

Susan Sorenson, who holds a doctorate in pharmacy, studied the use of 335 different drugs used in a PICU over a five-month period and found that 3 out of 4 were prescribed “off-label” at least once. “Off-label” is the practice of prescribing a drug for a condition or demographic other than the one for which it received FDA approval. Doctors have the right to so prescribe, and it’s often appropriate to do so, but the drug manufacturer may not promote a drug for any use other than what the FDA granted.

But as described in a report on MedPage Today, what appears to be a routine practice exposes patients to medications that may not have been adequately studied in children. Even if some compounds are suitable for pediatric use, if they haven’t been studied for that population it can be difficult to determine the proper dose and know the possible side effects and risks.

The study has not been published in a peer-reviewed journal, so it should be considered preliminary. The study group was limited to a single, 32-bed facility in Salt Lake where nearly all the patients (96 percent) were given a drug off-label at least once.

Drugs were considered to have been used off-label when prescribed for patients whose ages were not listed on the label, when no pharmacokinetic data (how drugs behave in the body over a period of time) were listed for the patient's age or when they were used for a disorder not approved by the FDA. The study involved 490 patients with ages ranging from 4 days to 17 years.

The most common medications prescribed off-label were morphine, ondansetron (Zofran, for the nausea and vomiting caused by chemotherapy and radiation treatments ), metoclopramide (Reglan, for heartburn and esophageal problems associated with gastroesophageal reflux disease), dopamine (for a wide variety of problems including shock, low blood pressure/heart attack, trauma and infections) and fentanyl (for breakthrough pain from cancer; that is, sudden pain that occurs despite other, ongoing analgesic treatment).

Recent legislation, including the the FDA Modernization Act (FDAMA) and the Best Pharmaceuticals for Children Act (BPCA), has addressed the issue of improved labeling for pediatric drugs. But, Sorenson told MedPage Today, “There’s still some work to do.”

We’ve written about the difficulty in researching and labeling drugs for pediatric applications and the fact that not even half of drug labels carry child-specific information.

Since passage of the BPCA in 2002, only 14 of 40 drugs with the highest number of off-label medication orders during the study have had labeling changes; 19 still lack safety and efficacy information for a pediatric population.

That seems like a roadmap of where to go next, but as Sorenson said, most of the drugs used in the study are off-patent, so it will be difficult to find funding to perform such expensive studies. If manufacturers cannot monetize new or additional research, they’re not motivated to conduct it.

There is some legislative relief: The BPCA extends patent protection for six months if a drug manufacturer agrees to perform pediatric studies. That can be added to the six months of market exclusivity granted by the FDAMA for performing studies in children.

If your child is in the PICU, closely monitor whatever drugs the doctors prescribe. Ask what they are, why they are being given, what is their intended effect and if they have been tested specifically for children or if they are being prescribed off-label. If the latter, ask if there are alternative therapies. And always ask what are the potential side effects and harms.

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October 12, 2012

Chronic Conditions in Kids Raise the Risk of Hospital Medical Error

About 44 in 100 pediatric inpatients suffer from chronic illnesses such as asthma, diabetes, epilepsy and cancer, according to the journal Pediatrics. And these sick kids are more likely to experience a medical error during the course of their treatment than patients who are seen for acute conditions.

In the study, medical errors were defined as abnormal complications to a specific medical procedure, adverse reactions to medications, infections and bedsores. But it is unclear how severe the medical mistakes were or if they caused significant or long-term harm.

Logic tells you that the increase in probability of a medical error is higher in someone who’s chronically ill—after all, the longer someone’s hospitalized and the worse his or her condition is, the higher the chances of complications from it. Duration and difficulty make treatment more challenging and exposure to infectious agents more likely.

The study involved 38 states in the 2006 Kids’ Inpatient Database (KID) to determine medical error rates. As reported on AboutLawsuits.com, not only was the medical error rate higher per 100 hospital discharges in children with chronic illnesses, but it was also higher per 1,000 inpatient days in children with chronic conditions.

In the 2006 KID:

  • more than 22 in 100 pediatric inpatients had one chronic condition;

  • nearly 10 in 100 had two chronic conditions;

  • 12 in 100 had more than three chronic conditions.

The researchers said that as many as 43 in 100 U.S. children have at least one chronic health condition, and almost 20 in 100 have two. These patients represent an increasing proportion of pediatric hospitalization, and account for the majority of noninjury hospital admissions. Children with special medical needs also are more susceptible to errors in emergency situations.

A report by the Institute of Medicine (IOM) found that nearly 98,000 people die in hospitals each year from a medical error that could have been prevented.

The message of the Pediatrics study was simple: The more chronic conditions a child suffers, the greater the likelihood that an error will occur when they are in the hospital. And the greater the need for parents to be strong patient advocates. To learn how, see our newsletter, “Protecting a Loved One in the Hospital.”

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January 24, 2012

Assessing the Quality of Hospital Care for Children with Asthma

Every year, more than 1.8 million people find themselves in a hospital emergency room to treat an asthma attack. Children account for nearly half that number, and of asthmatic people who go from the ER to an overnight hospital stay, more than 1 in 3 are kids.

As reported in the Patient Safety America Newsletter, three criteria to analyze the quality of care for children hospitalized for an asthma attack have been defined by the Joint Commission, an agency charged with assessing and regulating hospital practices. It also certifies health-care organizations and programs.

The measures of acceptable emergency treatment for asthma are:

  • drugs to relieve the acute symptoms;

  • administering corticosteroids to reduce inflammation; and

  • development of a complete home management plan.

These measures were studied and the results published in the Journal of the American Medical Association. Investigators looked at the records of more than 37,000 children treated in 30 children’s hospitals to determine how well those facilities complied with the treatment criteria and whether compliance reduced hospital readmissions or subsequent ER visits.

The news, mostly, was good—the first two measures notched 97% and 90% rates of compliance respectively.

The bad news lay in the follow-up: Compliance with a home management plan averaged only about 4 in 10 cases. But investigators determined that failure to comply with this measure had no effect on the rates of readmission or visits to the emergency room seven, 30 or 90 days after discharge from the hospital. Compliance did increase over the time in which measurements were compiled (early 2008 through the third quarter of 2010), so the state of this art appears to be improving.

But this curious outcome begs the question: If readmission/ER visits didn’t appear to be affected by noncompliance, why is No. 3 a quality measure at all?

Study authors offered several possible reasons for the lack of association between home-care follow-up and finding yourself back at the hospital.
1. The study didn’t look at how well the plan was implemented at home, nor could the investigators determine whether asthma patients were admitted to another hospital after their visit to the initial hospital.
2. Patients or their parents might not have understood the home-care plan and how to implement it. A commentary on this study noted that there is a "gulf" between patient-centered plans involving coaching and timely follow-up with parents, and often there is no written plan.
3. Readmission measures might be insensitive to the quality of care a child with asthma receives at home. Is it is time to search for other quality measures of care received by hospitalized children with asthma?

So if you’re the parent of a child with potentially life-threatening asthma, here’s how you can improve the chances of getting the best care should the need for an ER visit arise.

  • Identify in advance a nearby children’s hospital; it’s more likely to follow quality measures than a general hospital.

  • When your child is discharged, make sure you understand the follow-up care plan. There is no such thing as a dumb question. If the information isn’t offered in printed form, ask for it or take careful notes.

  • Get the name and contact information of someone who can answer any questions you have after you leave.

  • Inform your pediatrician of the care plan.

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January 15, 2012

Some Emergency Departments Deprive Injured Children of Effective Pain Relief

Anyone who has suffered a broken bone knows how painful it can be. Long bone fractures—those involving arms and legs—are common among children. Any parent wants to spare his or her kid from the intense pain of such an injury, but a recent study published in Academic Emergency Medicine has bad news in that regard.

Thanks to the crowded conditions in hospital emergency rooms, administering pain medication to children with long bone fractures is less effective and not as timely as it should be.

Researchers from the University of Colorado School of Medicine studied 1,229 patients treated in the emergency department of an academic children’s hospital for one year. They found that patients were 4 to 47 percent less likely to receive timely care and 3 to 17 percent less likely to receive effective care when the ER was crowded.

Previous studies have shown that adults consigned to crowded emergency rooms also get lower levels of pain meds. This study appears to be the first to investigate the affect of crowding on children with fracture-related pain.

It’s pretty much a no-brainer. As the lead author said, “When the emergency department gets busier, staff may be less responsive to the needs of individual patients, and as a result, patients have a higher likelihood of nontreatment and delays in treatment.”

Still, it’s not simply a function of too many people seeking care in an overburdened ER: Sometimes it’s hospital procedure. In some emergency departments, only doctors are authorized to prescribe pain meds, in others nurses are allowed to administer them to patients meeting certain criteria.

If the ER is crowded, the solution is to hire more staff. If that’s not feasible in this era of cut, cut, cut, the researchers say hospitals must “leverage the staff [they] have,” which means revising pain-management procedures by allowing nurses to administer analgesics and computers or phones to signal under-treated pain.

Because overcrowding is often the result of people seeking treatment for something that isn’t an emergency, the solution must be one of policy as well as practice. As the researchers said, “We as a nation need to get serious about this. Crowding needs to be a policy priority at every level.”

There should be incentives for patients to seek care at their own doctor’s office, including better compensation for primary care and disincentives for nonemergency use of emergency departments.

The best a parent can do is to anticipate the routine, if painful, medical emergencies children are disposed to experience. Call your doctor before you ever need ER attention, and ask him or her how you can ensure that your child receives pain mitigation in the event he breaks his leg at 9 o’clock at night.

  • Should you leave a message with his or her answering service asking him or her to run interference before you reach the hospital?

  • Are there are other measures you should take to cut through the crowd and get some relief?

  • Is being a squeaky wheel in the ER a good thing, or counterproductive?

No one wants to prolong a child’s pain; it’s a matter of finding a work-around when too many voices are clamoring for too few ears.

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November 6, 2011

Keeping Kids Safe in Hospitals

Hospitals help us heal. Unfortunately, sometimes they can make us sicker. As a parent concerned about your child’s welfare, use this checklist, courtesy of James’s Project, to successfully navigate your child through his or her hospital stay.

Hospital-acquired infections. Ask – demand, if you must – that every health-care provider from food server to surgeon washes his or her hands on entering your child’s room and/or before touching your child. Ask what infection-control procedures are in effect. For example, are the newest technologies and innovations in reducing catheter-associated infections in use?

Medication mistakes. Reduce the likelihood of a medication error by knowing what your child is being prescribed. Ask the person delivering medicine what it is, why it is being given and what is the dosage amount. Ask to see the medicine’s original container. Write it down.

Broken medical equipment. Ensure that alarm systems are working. Ask when they were last inspected. If the interval seems extreme, request that they be inspected immediately.

Poor communication. Communication in handing off care is vital. The care team should have a prescribed process to communicate all pertinent information from one provider, from one shift, to the next. Ask the hospital’s patient advocate what hand-off measures are taken. As a member of your child’s care team, you’ve a right and an obligation to see this checklist.

Failure to rescue. Sick children and babies need constant care and attention. Every parent should know what a family (or patient) activated rapid response team is, and every hospital serving the pediatric population should share it with you.

Rogue clinicians. Most health-care professionals are ethical and dedicated caregivers. But to protect your child from a bad egg requires transparency. Don’t be shy about asking questions. Expect detailed answers.

You can read more about how to become an effective advocate for a loved one in the hospital in Patrick Malone's book, "The Life You Save."

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