Patient Web sites used for news, support in crisis

By STEPHANIE NANO
09 june 2008--When he was diagnosed with kidney cancer last year, Dave deBronkart needed an easy way to keep his far-flung friends and family updated. So did the president of the American Medical Association when he fell ill months ago. And so did the mother of a soldier wounded in Iraq who later suffered brain damage.
They all turned to the Internet, setting up individual Web sites to give progress reports. In return, they get posted notes of encouragement and support — all without having to repeat the details in emotional and exhausting phone calls.
"I had already been burning myself out with phone calls" telling people, said deBronkart, of Nashua, N.H.
DeBronkart, like others, used free online services like CaringBridge and CarePages and their user-friendly formats to quickly set up a Web site to share the news — good and bad. Patients themselves or family members write about treatment and recovery from illnesses, accidents or other medical crises, such as a premature births.
Sarah Doyle first used CarePages to prepare her for the arrival of her now year-old son Aidan. She learned during her pregnancy that Aidan would be born with his liver and intestines exposed. She read about the experiences of other families who had dealt with similar birth defects.
"I got a good idea what to expect. It wasn't such a shock," said Doyle, of Bellingham, Mass.
She has used her own page to chronicle Aidan's 11 months in a Boston hospital, his multiple surgeries and his arrival home in March. She recently reported that Aidan said his first word: mama.
"We really use it as a tool to say: We've been through some of the worst and now we're doing fine," said Doyle, who's expecting a second child in September.
Both online services were born out of medical emergencies, and have been used by tens of thousands since.
Sharon and Eric Langshur used a Web site created by a relative when their first child, Matthew, was born with a heart defect in 1998 and needed surgery. From their experience, they created the Chicago-based CarePages.
"The emotional support really took us by surprise," said Sharon Langshur, who was in training to become a pediatrician when her son was born.
Sona Mehring was involved in Web site design in 1997 when friends were faced with a difficult pregnancy. When she offered help, they asked her to just "let everyone know what's going on." She set up a Web site that was the beginning of CaringBridge, based in Minneapolis.
Both services are similar, with different features. To set up a Web site, all that is needed is an e-mail address and access to the Internet. There are different levels of privacy — ranging from those open to anyone who knows the page name, to those that are restricted to approved visitors. Individual pages can't be found through search engines.
Once an update is posted, visitors can be notified through an e-mail alert system.
"These stories are very personal, very unique and very powerful," said Mehring.
For visitors, CarePages provides a list of do's and don'ts when dealing with someone with a serious illness.
"Illness and hospitalization are incredibly isolating, and then to have people back away, can be very hurtful," said Langshur.
CaringBridge is supported primarily by donations from users, as well as sponsor fees from hospitals. CarePages also has arrangements with hospitals and sells advertisements.
Children's Hospitals and Clinics of Minnesota has been using CaringBridge since its beginning and helps families do updates by providing computers and digital cameras. President and CEO Alan Goldbloom said the hospital draws patients from around the Midwest, so some families are hundreds of miles from home when their child is in the hospital.
"We just think it's made a huge difference for families," said Goldbloom.
People learn about the Web services from hospital workers, or just through word of mouth, according to the founders.
Dr. Ron Davis knew of two people who used them during illnesses. So when he was diagnosed with pancreatic cancer this year, the preventive medicine specialist decided to share his story.
As AMA president, Davis, 51, figured others would want to know what was going on. And he's using it as an educational tool, providing the details of his treatment, with lab results, and to spread the word about the value of the Internet services.
"We need as physicians to focus more on the patient's emotional needs," said Davis, of East Lansing, Mich.
DeBronkart had heard about CaringBridge from a colleague when he was working in Minnesota.
"When my time came, I said, 'I know what I'm doing," deBronkart said.
A self-described e-mail maniac who works in computer software marketing, the 58-year-old deBronkart was soon doing frequent, chatty entries, sometimes from the hospital in the middle of the night.
"It lets you stay in touch with people even if you literally can't get out of your bed and they're thousands of miles away," he said.
He's racked up more than 16,000 visits to his Web page, some from old friends and classmates that he'd lost touch with over the years. "It really went viral," he said.
Anne deBronkart used it to keep tabs on her son between visits from her Maryland home. She said it was better than group e-mails because she drew support from all the posted messages, particularly the humorous tales some contributed.
"We all need that when we're going through something like this," she said.
The mother of Marine Lance Cpl. John Doody uses CaringBridge to keep in touch with his Marine buddies, friends and relatives in the Denver area, where he grew up, and her new husband and friends in Idaho.
Chris Ott has been at her son's side since January when he collapsed while recovering from gunshot wounds from Iraq and suffered brain damage. For a time, she stopped answering her phone because "it was too painful to talk about it."
Her sister set up the Web page and soon Ott was posting updates, writing about each step in her son's recovery, the move from San Diego to a Veterans Affairs rehabilitation center in Tampa, Fla., and outings to the mall and beach. News that her 25-year-old son had begun to talk again brought a flurry of excited replies.
"It helps lift your spirits when you know people are thinking about you and praying for you," said Ott, who was married at her son's bedside in February.