Each year, about 70,000 young people in the U.S. aged 15 to 39 years are diagnosed with cancer.

In the series, a group of teens and young adults from Children’s Adolescent Young Adult Oncology Program talk about their experiences with the disease – from treatments and hair loss, to dealing with school, friends and family.

Producers of the series hope that seeing other teens and young adults with cancer talk about their experiences will help other young patients struggling with the diagnosis of cancer cope.

“It is so important for these teens and young adults with cancer to know that there is a peer out there that understands what they are going through and that support is available,”  Dr. Rebecca Johnson, medical director of the Adolescent and Young Adult Oncology Program at Seattle Children’s Hospital.

The discussion group was facilitated by Teen Talking Circles, a nonprofit organization that offers teens “a safe place to tell their truth,” and trains adults to start Teen Talking Circles in their communities.

• To view the complete series go to:  ”Good Times and Bald Times” or click on individual episodes listed below.

• To learn more visit the website of the Children’s Adolescent Young Adult Oncology Program.

To learn more about the challenges facing teens and young adults with cancer read our series from the NCI Cancer Bulletin.

Series Episodes:

• Good Times and Bald Times – Meet the Circle
• Good Times and Bald Times – Family, Friends & Cancer
• Good Times and Bald Times – How Did it Feel?
• Good Times and Bald Times – Treatment and Medication
• Good Times and Bald Times – Eggs
• Good Times and Bald Times – Fertility Preservation
• Good Times and Bald Times – Food, Appetite & Cancer
• Good Times and Bald Times – Feeding Tubes
• Good Times and Bald Times – Losing Your Hair
• Good Times and Bald Times – PICC Lines, Hickman Lines & Ports, Oh My!
• Good Times and Bald Times – Dealing with School
• Good Times and Bald Times – What If

The new clinic will be located in the Providence Mill Creek Medical Building - 12800 Bothell Everett Hwy, Ste. 150, Everett, WA 98208.

The clinic will provide treatment for children, teens and young adults ages 0-21 needing non-emergency medical care in the evenings, over the weekends and during the holidays.

No appointments or referrals are necessary.

Providence Mill Creek Medical Building - 12800 Bothell Everett Hwy, Everett.

In general, the cost — and time waiting — are less at urgent care clinics than they are at emergency rooms.

Hours of operation for Urgent Care at Seattle Children’s Mill Creek Clinic will be the same as Children’s Urgent Care Clinics in Bellevue and Seattle:

• Monday through Friday from 5 p.m. to 10:30 p.m. and

• Saturday, Sunday and holidays from 11 a.m. to 8 p.m.

Children’s Urgent Care Clinics are not intended for serious or life-threatening emergencies, hospital officials cautioned, and if a child being seen at a Children’s Urgent Care Clinic has an emergent medical need, the patient will be transferred to an Emergency Room (ER).

To help parents decide whether to take a child to the ER or to urgent care, Seattle Children’s has prepared a quick guide:

The mutation, called G551D-CFTR, is present in only about 4 percent of cystic fibrosis patients, but the findings suggest the drug may also benefit patients with more common mutations, either alone or, more likely, in combination with other drugs, said Dr. Bonnie Ramsey, director of the Center for Clinical and Translational Research at Seattle Children’s Research Institute and lead author on the study.

The findings also suggest that even adults with long-standing disease can recover at least some lung function, Dr. Ramsey said.  ”That was always a question: once you’ve had lung damage could you reverse it.”

Cystic fibrosis is the most common lethal inherited disease among whites, but occurs in other racial groups as well. About 30,000 Americans have the disease.

The disease is caused by mutations in the gene that provides cells with the instructions needed to make a protein called cystic fibrosis transmembrane conductance regulator, or CFTR.

This protein forms a channel through which chloride ions flow in and out of the cell. The protein also helps regulate the flow of sodium ions as well.

The flow of these ions, in turn, helps determine the viscosity of the mucous in the airways of the lung as well as the viscosity of secretions in other passageways, including those in the liver, pancreas, gastrointestinal tract and reproductive organs.

Mutations in the CFTR gene can have different effects. Patients in this study, for example, who have the G551D-CFTR mutation make channel proteins that do not open up properly. Ivacaftor binds to this protein and opens the channel so the ions can flow.

With other mutations, however, the malformed proteins may not even get to the cell surface or, if they do, not in sufficient numbers.

Without normally functioning CFTR proteins, a person’s secretions become thick and viscous. In the lungs, the thicker mucous blocks airways, leading to chronic lung infections and a relentless decline in lung function.

Blockages in other organ systems, such as the pancreas and liver, cause a variety of problems, including diabetes and malnutrition.

Despite advances in treatment, there is no cure and half of patients with cystic fibrosis die before age 37, most from respiratory failure.

In the new study, 161 patients age 12 or older were randomly assigned to either take ivacaftor or a placebo two times a day for 48 weeks.

At the end of the study, the researchers found that compared to those who took the placebo patients who took the drug saw their lung function improve 17 percent. They also saw a marked reduction in flares ups of respiratory symptoms and reported a general improvement in their overall health. In addition, on average, they gained more than 7 pounds over the 48 weeks of the study.

“It’s really the constellation of effects that’s impressive,” said Dr. Ramsey. “You have not only improvement of lung function, but also improved quality of life, a decrease in flare ups and a substantial weight gain.”

Trials combining ivacaftor with drugs that target other genetic defects responsible for cystic fibrosis are underway, Dr. Ramsey said.

Ivacaftor is being developed by Vertex Pharmaceuticals with financial support from the Cystic Fibrosis Foundation. The new study, which was funded by the company, the foundation and large number of government agencies, appears in the current issue of the New England Journal of Medicine.

Co-investigators in the Washington region are: Moira Aitken, MD, professor of medicine in the Division of Pulmonary and Critical Care Medicine at the University of Washington Medical Center and Ronald Gibson, MD, PhD, director of the Cystic Fibrosis Clinical Center at Seattle Children’s Hospital and professor of pediatrics at the University of Washington School of Medicine.

To learn more:

• Visit the National Library of Medicine’s Home Genetic Reference section on cystic fibrosis.

Additional information can be found on these National Library of Medicine pages.

• Encyclopedia: Cystic Fibrosis
• Encyclopedia: Cystic fibrosis – nutritional considerations
• Encyclopedia: Cystic fibrosis - resources
• Health Topic: Cystic Fibrosis
• Health Topic: Newborn Screening
• Tutorials: Cystic Fibrosis

The medical center hopes the new clinic will provide an alternative care option to the hospital’s Emergency Room for children needing non-emergency medical attention in the evenings, over the weekends and during the holidays.

Out-of-pocket costs for urgent care are typically less than an emergency room visit, the hospital noted.

Seattle Childrens already operates an urgent care clinic in Bellevue.

Hours of operation at the Seattle Urgent Care Clinic will be the same as Bellevue Children’s Urgent Care Clinic:

• Monday through Friday from 5 p.m. to 10:30 p.m.;

• and Saturday, Sunday and holidays from 11 a.m. to 8 p.m.

No appointment or referral is necessary.

“When the doctor’s office is closed, our Urgent Care Clinics can provide care for a child’s non-emergency illness or injury that can’t wait for routine office assessment,” said Rebecca Partridge, MD, director of Seattle Children’s Urgent Care Clinics.

The new clinic is located located on the fourth floor of the hospital’s Whale building in an area that during the day is used for regularly scheduled clinic appointments.

Children’s Urgent Care Clinics are not intended for acute or life-threatening emergencies, but are appropriate for minor illnesses and injuries such as sprains, cuts, head injuries without loss of consciousness, vomiting, diarrhea, dehydration, earaches, and mild asthma attacks, the hospital stressed.

In the event that a child has a more vital medical need, Children’s Urgent Care Clinics’ medical staff will transport the patient to Children’s ER. In the case of the main hospital location, the Children’s ER is within walking distance.

Remember, if your child’s illness or injury is life-threatening, call 911.

To help parents determine whether a visit to Children’s Urgent Care Clinics or the ER is best, Childrens has prepared a video: Should I Take My Child to the Emergency Room or Urgent Care?

Links

• Seattle Children’s Hospital Urgent Care Clinic

• Seattle Children’s Bellevue Urgent Care Clinic

Remember, if your child’s illness or injury is life-threatening, call 911.

Photo: Steve Woods

By Jordan Rau
This story was produced in collaboration with 

Medicare has begun publishing patient safety ratings for thousands of hospitals as the first step toward paying less to institutions with high rates of surgical complications, infections, mishaps and potentially avoidable deaths.

The new data, available starting last week on Medicare’s Hospital Compare website, evaluate hospitals on how often their patients suffer complications such as a collapsed lung, a blood clot after surgery or an accidental cut or tear during treatment.

The measures also include specific death rates for patients who had breathing problems after surgery, had an operation to repair a weakness in the abdominal aorta or had a treatable complication after an operation.

In addition, Hospital Compare is evaluating rates of some specific medical errors, such as giving patients the wrong type of blood, leaving surgical implements in patients’ bodies during surgery and falls that occur during their stay.

Survey of Patients’ Hospital Experiences

About the survey: HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) is a national survey that asks patients about their experiences during a recent hospital stay. Use the results shown here to compare hospitals based on ten important hospital quality topics. Read more information about the survey of patients’ hospital experiences.

The evaluations are part of Medicare’s broad move from paying hospitals a set amount for each procedure. That change was directed by last year’s health care law, which set up new “value-based purchasing program” that will begin in October 2012.

Over time, hospitals with the lowest quality—as judged by a variety of metrics, not just the new patient safety measures—will be at risk to lose up to 2 percent of their regular Medicare reimbursements under the health law.

The new data on patient safety moves Medicare further along toward its ultimate goal, which is to base payments on the actual medical outcomes for patients. To rate hospitals, Medicare is comparing them to the national rates for medical complications and hospital acquired conditions.

For instance, on average, 2.1 out of every 1,000 patients discharged suffered an accidental cut and tear from medical treatment. Out of 100 patients, 4.4 on average died after surgery to repair a weakness in their abdominal aorta.

By looking at how a hospital compares to the national average on this and other complication statistics, Medicare has come up with overall evaluations of how good hospitals are at avoiding complications and hospital-acquired conditions. Medicare is aiming to incorporate the new patient safety data into payments in the second year of the program.

Making this information public has been long favored by patient safety advocates. “This is pulling the curtain back on preventable health care harm to older Americans,” said Rosemary Gibson, co-author of “The Treatment Trap” and editor of a series of articles on overtreatment in the Archives of Internal Medicine. “These are really good things to know. We are really getting into the meat of what can happen to patients in hospitals.”

But the latest data is intensifying objections from the hospital industry and some academic researchers that Medicare is using dubious and unfair measurements in ways that will hurt some hospitals, particularly those with sicker patients. The data is based on billing claims that hospitals submit to the government, not clinical medical records.

One concern held by hospitals and researchers is that hospitals categorize the same things differently when billing Medicare, skewing comparisons.

“Medicare claims data is the thing a lot of people judge from, but it’s a large database and frankly I’ve always wondered if apples and oranges are being mixed,” said Dr. Gerald Healy, a senior fellow at the Institute for Healthcare Improvement, a Massachusetts nonprofit, and past president of the American College of Surgeons.

Hospital officials said their initial review of the new data has exacerbated their concerns that Medicare’s calculations do not fully take into account the fact that some hospitals do more surgeries or treat sicker patients.

“We believe the data is fairly seriously flawed in the way it’s calculated,” said Nancy Foster, a vice president at the American Hospital Association. “When inaccurate data is out there, it both misleads the public and generates a lot of activity that is unproductive in the hospital.”

Atul Grover, head of advocacy for the Association of American Medical Colleges that represents teaching hospitals, said some of Medicare’s measures also make teaching hospitals look worse.

“If you’re not appropriately risk-adjusting on this, you’re already selecting a patient population that’s more likely to die,” he said. “That’s why they come to us, because other people are reluctant to operate on those complex cases.”

Officials at the Agency for Healthcare Research and Quality, which designed many of the measures, referred questions to Medicare. Officials there were not immediately available to discuss the new measures. Dr. Patrick Romano, a professor at the University of California, Davis School of Medicine who helped the government design the measures, said the measures do take the sickness levels of patients into account, although not as thoroughly as Hospital Compare’s existing evaluations of readmissions and hospital-wide mortality rates.

Still, he said the measures were a good addition to the overall view of how well hospitals are doing. “We’re trying to understand a large animal like an elephant or a whale,” he said. “To do that, we take pictures from a variety of perspectives, with different cameras and different techniques.”

Hospital Compare was originally designed to be a helpful consumer tool, but to date it has not been widely used by patients choosing hospitals. Experts caution about drawing dire conclusions from the raw rates of hospitals, as some of the measures are complex and differences not statistically significant.

For some of the measures, Hospital Compare categorizes most hospitals simply as “average,” “above” or “below” the national norm, which experts say is a better way for consumers to know whether a hospital is an outlier.

To find a hospital on the site, type in the city and state, click on the hospital name and then select the “Patient Safety Measures” tab at the left. Hospital Compare also gives patients the option of choosing several hospitals at once. The new data covers the period between October 2008 and June 2010.

Medicare last week also announced 18 more measures it is considering for inclusion in the value-based purchasing program.  Many of these measures look at how hospitals handle stroke patients and what steps they take to protect patients from blood clots. Others are intended to address two bacterial infections that can spread through hospitals: Clostridium difficile and Methicillin-resistant Staphylococcus aureus.

Illustration: Steve Woods Photography

Contact Jordan Rau: jrau@kff.org

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.