LeadingAgeMagazine: Self-Management for Chronic Diseases

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LeadingAge magazine November/December 2011

Burcham Hills Retirement Community

Nurse Ky Buhlman, left, works with Burcham Hills rehab client Tom Kelly as part of the organization’s chronic disease management program.

Self-Management for Chronic Diseases

by Carol Milano
As seniors grow greater in number, enjoy longer life expectancies and expect to age in place, efforts to help them manage chronic diseases take on greater urgency. Providers are offering chronic disease self-management programs, backed by research, to help seniors and their families improve their quality of life and prevent unnecessary hospitalizations.

Chronic disease self-management programs work. By enabling older people with asthma, diabetes, coronary disease, and other ongoing ailments to take greater control of their conditions, they improve health, self-esteem and quality of life. Effective self-management often allows seniors to remain in their homes longer, thanks to fewer hospitalizations or emergency room visits, and possibly less dependence on other people.

The classic chronic disease self-management program (CDSMP) was developed at Stanford University’s Arthritis Center Education Office in the early 1990s. Designed to help patients co-manage their own health care, the highly structured six-week, peer-led, two-hour workshop uses carefully-selected content and exercises. Partnering two workshop participants provides encouragement and bolsters confidence. Eventually adapted into separate programs for diabetes and general chronic diseases, each Stanford model is evaluated through a two-to-four-year randomized controlled trial. After a program is proven safe and effective, Stanford will license it to other organizations.

Studies of Stanford chronic disease programs have been published in dozens of prestigious journals. In one early Arthritis Self-Management Program trial, participants reduced their pain and utilization of medical services, and improved quality of life for at least four years compared to the control group. Stanford’s highly-respected programs are now available in over 20 languages.

The Role of Self-Management Programs

“Frequently, it isn’t lack of knowledge that causes poor health behaviors,” asserts Jay Greenberg, National Council on Aging (NCOA) senior vice president for social enterprise. “It’s lack of confidence in their ability to understand their disease and make changes. They may get so much health information that they simply feel inadequate to the tasks. Many seniors with chronic conditions have undiagnosed depression. That’s where workshops really help, by providing support and reinforcement from people living with these conditions, not just from experts.”

In self-management programs, “Consumers gain information and awareness, perhaps even confidence in their ability to control what their future will look like,” says Maureen Hewitt, president and CEO of Total Community Options in Denver and chair of the LeadingAge Transitions and Integrated Services task force. The task force surveyed self-management programs to find integrative care models. “Workshop participants can determine how health impacts their lives, what kind of care they want, and how much control they can take. We saw real cross-over potential for transitioning all the health care services through housing.”

Hewitt emphasizes the necessity of a Medicare component for self-management programs. Besides Stanford’s cost-effective approach, she praises the University of Colorado’s patient-centered Care Transitions in Communities, which provides tools to ease medication-related problems. “Guided Care, at Johns Hopkins University, is the type of evidence-based care-planning that incorporates all the traditional measures,” says Hewitt.

Stephen Wegener, an associate professor of Physical Medicine and Rehabilitation at Johns Hopkins School of Medicine, helped develop Guided Care in 2001. “We combined evidence from studies of existing programs, like Stanford’s, into one synergistic practice, choosing only approaches proven to push the patient in the right direction,” he recounts. “For a group of Medicare patients—high-risk, high-cost, high potential to be institutionalized—we’re trying to reduce health costs and maintain them in their houses.”

Guided Care investigates whether, for such a vulnerable population, this blend of services can raise patient satisfaction with care, improve health outcomes, and reduce institutionalization. Assessing Guided Care’s effectiveness requires constant evaluation. “We track everything: hospital costs, utilization outcomes, cost outcomes, quality of care, physician satisfaction, caregiver strain, etc.,” says Wegener.

Many aging-services providers offer some form of chronic disease self-management programs. The following are three communities’ experiences.

Senior Center Sessions

LeadingAge Nov-Dec11 CDSMP meeting 335 wide

Senior Connections

Two Senior Connections dieticians—Laurie Ledford and Susie Park (seated, facing camera)—conduct a chronic disease self-management class at the North DeKalb Senior Center, one of five DeKalb County centers where the classes are offered.

Senior Connections in Atlanta, in partnership with DeKalb County’s Office of Senior affairs and the Atlanta Regional Commission, provides Stanford’s CDSMP workshop at five different senior centers. Three Senior Connections dietitians, trained as group lay leaders, partner with other facilitators, county-wide.

In different neighborhoods, participants—mostly women—are mainly African-American, Korean, or Caucasian, often suffering from diabetes, high blood pressure, or arthritis. Workshop leader Mary Crommelin Groover, Senior Connections’ manager of nutrition programs, explains, “Rather than going into detail about any one chronic condition, we talk generally about dealing with pain, fatigue, medications, side effects, and communicating with health care providers.” Attendees brainstorm, sharing tips for things like remembering to take a medication, or starting and sticking to an exercise routine. The main complaint? Session length. Participants are encouraged to walk around during a 20-minute break.

Averaging 16 people, the groups have distinctive personalities and dynamics. For example, one workshop’s participants all lived in a high-rise and knew each other well. “They could offer very specific assistance and advice during problem-solving. People get so much from being in a group,” says Groover, “making it fulfilling for instructors.” At “graduation,” everyone receives a certificate. Though there’s no formal follow-up, “patients let us know what they’ve learned, and even send testimonials,” Groover says.

Individual Training

In 2008, Burcham Hills Retirement Community, East Lansing, MI, was the only CCRC invited to join the Greater Lansing Care Transitions Project to reduce rehospitalization rates among patients with heart failure, the region’s leading readmission cause. Through focus groups with providers, physicians and heart failure patients, project members developed an educational tool, the “Heart Failure Passport.” Burcham Hills initially used it with 35 heart failure patients, in short-term rehab or SNF.

Building on Passport contents during individual sessions, physical and occupational therapists, nurses, dietitians and social workers helped patients understand their disease and its processes.

“Our aim is teaching them to manage their condition, so that they are successful as they transition to home,” says Jennifer Pruitt, Burcham Hills operations director. “We considered their home support system, financial situation, and logistics for getting food, medicine and other essentials, then trained them to monitor symptoms, make better food choices, take medications correctly, improve physical function, maximize benefits of therapies, and manage challenges.” The Passport reinforces what they’ve learned once they discharge to home.

After patients transitioned to homes, 95 percent followed their home health instructions within 24 hours post-discharge. Seventy-five percent saw their primary care doctors within seven days. Forty-three percent continue to use their Passport. After 30 days, 93 percent had no hospital readmission due to congestive heart failure.

“Overall, the Passport has been effective for educating patients on their chronic condition and giving them tools for being more successful at home,” Pruitt reports. “You need someone to champion the chronic disease self-management process in your organization, and metrics to drive your decision and process. Look at your resources. Make adjustments so that your results become attainable; we found we needed additional nursing hours.”

The Costs

Who pays to present chronic disease self-management programs? Most are free to attendees. For Senior Connections, DeKalb County’s grant covers all program costs, including the fee to license Stanford’s program.

The Duke Endowment funded Lutheran Homes’ initial self-management programs. Cindy Curtis, BeWell program manager, seeks ongoing funding opportunities. “We’ve partnered closely with the Arthritis Foundation and Lieutenant Governor’s Office on Aging,” she reports, “and receive other grants (sometimes from national organizations, like the Alzheimer’s Association) because we’ve hosted training sessions and disseminate these programs to the greater community.”

Burcham Hills paid for its “Passports” and staff training costs. The completed three-year project was funded by CMS. To expand their heart failure program to COPD, diabetes and hypertension, Greater Lansing Care Transitions Project members are seeking funding through the Affordable Care Act and/or a local sponsor.

Through foundation grants to NCOA, “Better Choices Better Health” is being offered at no charge (until available slots are filled). “That’s how we test and improve the program,” says Greenberg. To learn more about the on-line workshop and free enrollment (which includes the accompanying book for each participant), visit selfmanage.org.

Choice of Programs

Lutheran Homes of South Carolina won the 2010 Aging Services of South Carolina Award for New Development for its BeWell program of evidence-based self-management opportunities.

Lutheran Homes has used the Stanford model successfully since 2007, for residents’ wide range of chronic conditions. Lutheran Homes selected other approaches supporting their wellness initiative, “helping residents with chronic conditions maintain or improve their independence levels—using the evidence available,” says Denise Dickinsen, vice president. Dozens of staff members have been trained to lead different programs.

Lutheran Homes also uses the Arthritis Foundation’s Self-Help Program^SM, focused on proactively managing its chronic difficulties, and suitable for anyone who wants to keep moving. (Many other self-management programs use its exercises.) “It’s been very beneficial, by helping residents with flexibility, balance, and even improving their lifestyle,” notes Dickinsen. “One resident was thrilled that she could finally put on pantyhose and go to services!”

Matter of Balance is another evidence-based program Lutheran Homes has adopted. An eight-week program developed at Boston University, Matter of Balance treats a risk factor common to many chronic conditions: the emotional aspects of falling. This workshop enables participants to face and lessen fears. For higher-functioning seniors, the FallProof™ program builds strength and endurance, through numerous exercises and fall management techniques. Many attendees have congestive heart failure, osteoporosis, low blood pressure, or other cardiac and neurological problems.

Lutheran Homes presents self-management programs at its five campuses. All residents, as well as community members over 50, are welcome. Matter of Balance, also offered at local churches, attracts as many as 35 registrants. “Each program has evaluation forms. We track comments,” says Dickinsen. “Often, they find they can manage their condition much better.”

The On-Line Workshop

Despite their impressive results, in-person workshops won’t work for everyone. People may have limited mobility or poor transportation access to a workshop site. To increase reach, NCOA has partnered with Stanford to bring “Better Choices Better Health” (BCBH), the Internet version of Stanford’s workshop, to scale. Major aims, says Greenberg, who led NCOA’s team, “are improving patient self-confidence; lessening depression; changing behaviors to, for instance, start exercising; and reducing use of health care resources like emergency rooms.”

To replace the in-person workshop’s intimacy, trained facilitators—who also have chronic conditions—encourage participants to write their goals on the bulletin board. “Posting a challenge they want help with gets responses,” Greenberg’s learned. “Anonymity is more comfortable for people who couldn’t bear sitting in a room talking about their health problems. Others can’t imagine going on-line and sharing thoughts and feelings with total strangers. One size never fits all.”

BCBH is continuously studied and evaluated. Two recent studies measured medication adherence, which was shown to improve. Preparing a “structured action plan” helps each participant set goals and assimilate into the group. Among the first 3,250 participants, 65 percent completed the online program, which can work especially well for rural areas or multi-site CCRCs, by allowing a chance to “meet” residents in other locations. The on-line group size is 15 to 30 participants; the optimal number is 25.

Just what can a self-management workshop mean to an individual? When Senior Connections’ Groover encountered a graduate of her CDSMP group, the woman mentioned having been diabetic for decades, and suffering from neuropathy during the workshop. “Six months later, she was off all her meds, her three-month average blood glucose level was down by 5.5 percent, and she’d lost 40 pounds!”