By JUDITH EVANS
When Barbara Tucker enrolled in a chronic disease management workshop three years ago, she was confined to a wheelchair and frequently was unable to talk due to the effects of polymyositis, an inflammatory disease of the muscles, and scleroderma, which causes a hardening of connective tissue. She received all of her nutrition through a feeding tube and was so malnourished that most of her hair had fallen out.
Barbara Tucker
Today she walks without assistance, participates in an exercise class, speaks strongly and has regained her lost weight and her hair. Her transformation, she says, was made possible when a friend spotted a newspaper blurb announcing a workshop for people with chronic health problems. The workshop was sponsored by Woodland Healthcare, a hospital near Sacramento, Calif., that is part of the Dignity Health system. "She said, 'Barbara, maybe you want to do this.' She was trying to make me do things on my own. She said, 'you need to make that call.'"
Tucker, who lives in Woodland, made the call. "I am so thankful for it," she said. Without the workshop, "I don't know where I would be today."
She gained a support system and a source of expert advice. Facilitators steered her to a speech therapist, and diabetics in the group helped her learn about nutrition. "The whole group was a really big part of what we did for everybody," she said.
Overcoming fatigue, isolation
The evidence-based program offered by Woodland Healthcare was developed at Stanford University with support from Kaiser Permanente. It offers patients education and support to manage symptoms and improve their quality of life. Over the past 20 years, about half a million people around the world have participated in the Chronic Disease Self-Management Program workshops, said Kate Lorig, a registered nurse with a doctorate in public health who initiated and leads the Stanford Patient Education Research Center. Stanford has developed similar workshops (some of them offered online) for people with arthritis, diabetes, back pain and HIV.
Participants in the chronic disease workshops meet for 2 1/2-hours each week for six weeks. The workshops are free to participants; funding comes from grants and sponsoring medical systems. The curriculum includes techniques to deal with frustration, fatigue, pain and isolation; exercise strategies to improve strength, flexibility and endurance; nutrition information; communication skills to use when speaking with physicians, family and friends; appropriate use of medication; and ways to prevent falls.
The program is designed to help adults with any chronic condition or combination of conditions. Research shows that it can help anyone who is not cognitively impaired, Lorig said. "Older people have an average of 2.2 chronic conditions," she said. "They were getting information on a condition-by-condition basis. It was very expensive, very confusing."
Hospitals, community centers and government agencies are among about 10,000 organizations that Stanford has licensed to conduct the workshops, Lorig said. Each session has two trained facilitators, and at least one of the facilitators has a chronic condition.
Common issues
"People with chronic illnesses have many of the same issues" no matter the diagnosis, said Sarah McKechnie, manager, community fitness, for Holy Cross Hospital in Silver Spring, Md., which offers the workshops. Holy Cross is a member of the newly merged Trinity Health/Catholic Health East network. "Chronic illness is different from acute illness. It continues on and on, so it becomes a matter of managing the illness."
"Identifying common problems, that kind of brings a synergy to the group," she said. "People are very afraid of the word 'chronic.' I think moving forward, there will be less of a stigma to that word."
Holy Cross holds workshops throughout Silver Spring. "One of the most important aspects of our hospital mission is to provide accessible services to our most vulnerable and underserved populations," McKechnie said. "We place a high priority on holding Chronic Disease Self-Management Program workshops in areas that have been identified to have the greatest need for health care services."
Confident patients
At Dignity Health, Eileen Barsi, senior director of community benefit, describes herself as the program's cheerleader and implementer. "The program is so incredible because it's been successful internationally, no matter where it's offered," she said.
"The beauty of the workshops is that they want to empower the participants," she said. "They learn strategies and techniques to manage their conditions every day." Dignity offers the program in 30 of its hospitals, she said. In Dignity Health hospitals where "we don't offer it ourselves, oftentimes we're partnered in the community with public health or another agency." Dignity holds classes in Spanish and English. In San Francisco, a class is taught in Chinese, and in Long Beach there's a class taught in Khmer.
Last year, Dignity Health hospitals invested $2 million in evidence-based, chronic disease self-management programs that served more than 13,000 people, said Lauren Davis, Dignity's manager of media relations and issues management. Dignity followed up after three months and after six months, learning that only 5 percent of the participants had required hospital or emergency room services after their workshops ended. "Most participants report increased confidence in management of their conditions and improved quality of life," Davis said.
Key to success
The key to the program's success is the action plan that each participant develops during the sessions, Holy Cross' McKechnie said. "Patients are given information and asked to make an action plan for themselves: something that they want to do, something that will have a positive impact on their health. Each week, they share how they did on their action plan. The group is invited to give feedback and share suggestions. It becomes much like a support group, where people share warm, friendly feelings."
Facilitators also discuss the importance of having an advanced directive dealing with end-of-life issues, McKechnie said. "There is a session on the importance of that, of having everything in place. It reduces the stress level of the patients and the families."
Subtle action, sound results
Wynett Isley benefited so much when she enrolled in the program at Holy Cross that she became a facilitator. She has degenerative disc disease. "Pain is my constant companion," said Isley, 56, who lives in Silver Spring.
The program taught her that five minutes of stretching in the morning helps her throughout the day. "If I don't do that for three days, I can hardly move," she said. "That sort of subtle action on my part had a remarkable impact on my quality of life."
She wanted to help others gain the same advantages. "The techniques are easily learnable, in small groups so you realize that you're not as isolated as you thought you were," Isley said. "That really appealed to me."
She said the program offers a tool kit. "Some will work for you, and others won't. What you're learning through the six sessions is that you can make a choice."
One choice is whether and when to share information. "Sometimes the people who help you are overly helpful, so you become an invalid," she said. "Sometimes they go in the other direction … Sometimes they're kind of fed up." Facilitators offer suggestions for both scenarios, and role-playing exercises teach how to communicate well without becoming defensive or offensive.
"What I'm learning exponentially is that I am empowered. I am no longer disabled; I am enabled," Isley said. "That whole mindset is gone after that six weeks."
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