Children get online to better manage their cystic fibrosis from home

Study is under way to see if Stanford-developed Internet system can lessen the heavy load of caring for the chronic disease

Children with cystic fibrosis face a lifetime of disease management.

Their daily mix of medications is adjusted regularly. They routinely undergo respiratory therapy. They must consume special enzymes to digest food, which they must eat in large quantities to ensure that they have normal growth. And they must try to exercise so that their bodies are strong enough to fight off the respiratory infections that inevitably strike.

The challenge of following this daily grind has led researchers at the School of Medicine to study whether an online disease management system can help keep such children healthier. “The question is this: will kids change how they care for themselves because they have this arm reaching into their homes from Stanford,” said Gail Farmer, research coordinator for the study at Lucile Packard Children’s Hospital.

The research is the first to study the use of an online tool to manage cystic fibrosis. Similar systems have proven successful in improving the health of adults with chronic illnesses such as diabetes, heart disease and AIDS. And the same Stanford research team has used telemedicine to manage asthma in children.

Children with cystic fibrosis often cycle in and out of the hospital with life-threatening respiratory infections. And their growth can stop for extended periods because their digestive tracts often lack sufficient enzymes to digest food properly.

The researchers hope their online tool – CF.Doc – will nudge kids to put on some inches and pounds while also improving their quality of life and the delivery of health care.

The Web site allows teenagers (on their own) and younger children (with their parents’ help) to track their growth, keep a nutrition diary, set goals for healthy changes and access monthly “tips.”

Patients and their families can also send secure messages to physicians and nurses at the hospital’s cystic fibrosis clinic and experience “virtual office visits” by responding to online questionnaires.

“It’s a novel and efficient way for patients to interact with physicians, to learn about their disease and to access needed care,” said David Bergman, MD, principal investigator of the study and associate professor of pediatrics.

It may also provide a little relief to doctors and their staff: Many physicians prefer answering patient questions by e-mail, said Farmer, because it sidesteps the endless games of phone tag that otherwise occur.

Farmer will offer some preliminary observations about the project this Saturday at a quality-of-care seminar at the North American Cystic Fibrosis Conference in St. Louis, though the study will not be completed until next autumn. Sixty-seven cystic fibrosis patients aged 1-22 are enrolled in the study. Half – the control group – answer only a quarterly online questionnaire about their health while receiving traditional forms of care. The other half has full access to the Web-based tool.

Jennifer Cornell, mother of 10-year-old Cameron Cornell, has been using CF.Doc for about six months. “Some issues come up at odd hours,” she said. “I now have a way to send in questions that aren’t urgent but otherwise might not get answered.”

Cornell also values setting monthly goals with her son. “I don’t think I have the discipline to set monthly goals without this tool,” she said. “It keeps us on track.”

The goals Cornell sets for her son vary monthly: She might want him to get more exercise or to take certain medications he hates.

According to Farmer, one parent was ecstatic because the goal-setting tool helped her child learn to swallow pills. Another patient – a 20 year old – started out with no goals, but later decided she should get more exercise. That’s what Farmer expects: that families will use the tool however they need it most.

With funding from the Thrasher Foundation, Stanford researchers developed CF.Doc by modifying a commercial health management tool called MyFamilyMD, created by I-trax. If the Web site proves

effective, I-trax may sell the package to hospitals or clinics that will then share it with patients.

“If the online tool works for cystic fibrosis, it might be effective in the management of other pediatric chronic diseases as well,” said Farmer.