miércoles, 7 de marzo de 2012

A Conversation with The Who's Roger Daltrey about Teen Cancer Centers ▲ NCI Cancer Bulletin for March 6, 2012 - National Cancer Institute

NCI Cancer Bulletin for March 6, 2012 - National Cancer Institute

A Conversation with The Who's Roger Daltrey about Teen Cancer Centers

Roger Daltrey of The Who joins teenagers with cancer at the launch of the UCLA Daltrey/Townshend Teen and Young Adult Cancer ProgramRoger Daltrey of The Who joins teenagers with cancer at the launch of the UCLA Daltrey/Townshend Teen and Young Adult Cancer Program.
Roger Daltrey, lead singer of the rock band The Who, has been an active spokesperson for the creation of specialized cancer treatment centers for teenagers and young adults in the United Kingdom for the past 12 years. Last fall, he and The Who guitarist and songwriter Pete Townshend, along with other well-known musicians, supported the launch of the UCLA Daltrey/Townshend Teen and Young Adult Cancer Program Exit Disclaimer, which serves teen and young adult cancer patients at the Ronald Reagan UCLA Medical Center. (See the box at the bottom of the page.)

How did you get involved with teenagers and young adults with cancer?
My doctor and his wife, Drs. Adrian and Myrna Whiteson, had the idea to set up the Teenage Cancer Trust Exit Disclaimer in the early 1990s to create specialist treatment units for teens with cancer, and they enlisted me as a patron. Using the first rule of patient care—observation—they noticed that teenagers with cancer were suffering needlessly because the medical profession had failed to realize that teenagers aren’t children, and they’re certainly not adults. They are a completely separate group and need to be treated in an environment of their own that is teen friendly.

Eventually, I thought it was such a great idea that I decided to get more hands on. By 2000, the Trust had built six treatment units, and I got heavily involved after I learned that two of the six units were due to be pulled down because they were located in Victorian-era hospitals. It felt like we were going backward, in a way.

The Who did a 2-night charity show at the Royal Albert Hall with a lot of guests, including Eddie Vedder, Bryan Adams, Noel Gallagher, Kelly Jones, and Stereophonics. It was fabulous, and we gave the Teenage Cancer Trust the rights for the concert DVD and the live album. They made enough money to replace the two treatment units. The financial success of these shows was great, but the publicity generated was an added bonus for bringing the issue to the public’s attention in the U.K. The Trust was gaining a stronger profile, and we’re now in our 12th year of running these charity shows.

The Teenage Cancer Trust has to pay for every nut, bolt, brick, door, and window, as well as the furnishings, with the average cost now running at about $5 million. As of today, we’ve built 17 hospital wards within our National Health Service for teen and young adult cancer patients, with a further 10 wards under construction. It’s been a phenomenal success.

What is unique about these teen treatment centers?
We get teenagers involved in designing the centers. We make spaces for them to be quiet when they want to be quiet, noisy when they want to be noisy, in teenage-friendly surroundings. We have areas where they can carry on their studies, so they don’t fall behind in their schooling. There are kitchens where they can cook for themselves and facilities for parents—because, as you know, parents of cancer patients need an awful lot of support as well during this time.

Any parent who has had teenagers will tell you, the hardest thing to get teenagers to do is talk to you. There are high rates of misdiagnosis or delayed diagnosis of their cancers. They also suffer from very rare forms of cancer and the disease can be extremely aggressive, and so it’s a bad situation all around. They’re hammered with these diseases right at that stage of life where even a pimple on your nose is a disaster.

When you’re losing your hair or your leg or, even worse, your life, it's important to open up, but a lot of teenagers withdraw instead. When we put teens together, they really do support each other. They talk to each other very, very openly and honestly, and that’s a psychological boost. You can only get that by putting them together. They’re very secretive around adults. It’s part of the teenage process, isn’t it?

What impact have the centers had on young patients?
What is wonderful about our system in the U.K. is that, because we have nationalized medical care, everybody gets the same medical treatments, including the teens in our special units. We’ve now got figures over almost a 20-year period where we can compare the teenagers who went through our units to teenagers who were unfortunate enough not to have that access.

Members of the pediatric medical profession are finding that our teens appear to do better than teens outside our centers who receive the same treatments. That impact continues to be studied and, if it’s confirmed by more data, that improvement can only be due to the psychological benefit for the teens who are treated in our units.

How did you get involved in the UCLA teen cancer center?
About 2 years ago, I did a benefit for an autism charity in Los Angeles, where I met the head of the UCLA Health System, Dr. David Feinberg. I told him about my work with the Teenage Cancer Trust, and within 2 months they had a team from their hospital come to England. After thoroughly looking over our units, they said, “This is the gold standard for treating teens and young adults, and UCLA has got to have it.”

They made space available in the UCLA hospital to set up a unit. In November 2011, I performed at a concert with Robert Plant and Dave Grohl to raise the funds to furnish the facility.
I also had the pleasure of welcoming and meeting [the unit’s] first patients. I think it will be the first of many such centers in the United States. We’re already talking to medical center leaders at Yale University and Duke University. With the help of the American public and, I hope, more people in the music business—who rely on teenagers for a large part of their revenue—these facilities can be available to every teen and young adult in America.
—Interviewed by Bill Robinson
For more information on adolescent and young adult cancers, see the NCI Cancer Bulletin’s 2011 special issue on the topic.
UCLA Teen and Young Adult Cancer Program to Open New Facility
Boosted by the success of the fund-raising concert last fall by The Who lead singer Roger Daltrey and other well-known musicians, the UCLA Daltrey/Townshend Teen and Young Adult Cancer Program Exit Disclaimer will begin construction this spring on a specially designed inpatient/outpatient facility for adolescent and young adult (AYA) cancer patients at the Santa Monica–UCLA Medical Center.
The new unit is modeled on the AYA centers established by the Teenage Cancer Trust in the United Kingdom. “We’ll have an eight-bed AYA unit with a social zone at the center for the patients to hang out together,” said Dr. Jacqueline Casillas, director of the UCLA program. “One thing we’ve learned from the U.K. teen centers is to try to think outside the box of traditional health care delivery for this patient population.”
That includes seeking feedback from UCLA’s Teenage and Young Adult Advisory Group, Dr. Casillas noted. “They asked us to take the word ‘cancer’ off the sign on the door to the AYA unit,” she recalled. “They told us: ‘You really don’t need to say 'cancer' on the front of the door!’”
The Santa Monica unit will also provide outpatient chemotherapy services in the social zone, so that patients can receive treatment in a supportive environment and during extended hours more adapted to teenage lifestyles.
Dr. David Feinberg, CEO of the UCLA Health System, commented: “We feel confident that this first Daltrey/Townshend Teen and Young Adult Cancer Program in America will establish a more healing environment for our adolescent patients and set the stage for an expansion of the program to medical institutions across the United States.”

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