Self-Management for Chronically Ill Pays off with Improved Outcomes, Fewer Office Visits
From 1998 to 2002, researchers at the Stanford University School of Medicine developed and evaluated a disease management/patient self-care program for patients with chronic disease. The program, called "Health Partners," offered patients a choice of enrolling in either self-management education workshops or group visits with physicians or both.
Key findings derived from the first year of observations included:
- Measured physical disability continued to increase during the first year of observation, but most other measured outcomes remained stable or improved.
- Participants made fewer office visits than they had before entering the program.
- Participants in group visits found the experience more helpful than did workshop attendees, but the latter improved more on the measured outcomes.
The Robert Wood Johnson Foundation (RWJF) supported this project through a grant of $345,589.
The U.S. health care system evolved at a time when the predominant concern was treatment of acute conditions. Chronic disease, usually incurable, requires substantial management over time. Proper management requires knowledge of how the illness progresses. Because the patient is in the best position to observe that progression, he or she should play a role in choosing a course for managing the disease.
This project originally called the Program for Management of Chronic Disease aimed to develop and evaluate a disease management/patient self-care program for patients with three chronic health problems: chronic lung disease, chronic heart disease and diabetes. Researchers at the Stanford Medical Center, an academic hospital, planned to recruit 900 patients into a randomized controlled trial, half of whom would receive an intervention including intensive training in self-management techniques, monthly group consultations and support group meetings with providers, increased home care and a system allowing them to consult with medical personnel by phone in lieu of office visits. The researchers were forced to abandon this approach because they could not recruit enough participants.
After consultations with the RWJF program officer, the researchers designed a revised project renamed "Health Partners" to remove any pejorative implications of the words "chronic disease" that offered patients the opportunity to participate in one or both of the following options:
- Self-management education workshops: Groups of up to 20 patients met for two hours a week for six consecutive weeks and addressed such issues as the continuous use of medication, behavior change, pain control and learning to interpret changes in the disease.
- Group visits with physicians: Seven groups of 8 to 15 patients met approximately monthly with their principle doctor. Group sessions explored issues raised by the patients, including treatment effects and side-effects, nutrition, loneliness, fear, anger, family dynamics, sexual function, physical handicaps, dependency, maintenance of a personal sense of worth and effect upon caregivers.
The project enrolled 226 patients with one or more chronic diseases. The age range of the patients was 25 to 81, with a mean age of 59. The most common five diagnoses were heart or lung disease, diabetes, osteoarthritis and inflammatory rheumatic disease. Throughout the study, patients continued to receive their usual care. Researchers assessed patient status at baseline and at intervals of six months thereafter, examining changes in health status of participating patients, selected patient behaviors, service utilization and patient and physician satisfaction.
Other sources of support included:
- Aetna Foundation, $278,125
- Stanford Health Service, $20,000
- private contributions, $50,000.
At the end of the grant period, project staff reported the following findings for participants who had been in the program for six months (130 patients) or one year (104 patients):
- Measured physical disability continued to increase during the first year of observation, but most other measured outcomes remained stable or improved. Outcomes measured included communication with doctors, perceived self-efficacy, depression, health distress, fatigue, shortness of breath and pain. While few of the improvements reached statistical significance, the overall positive trend in participants' emotional state, comfort and confidence suggested improved adjustment to their condition, according to the principal investigator.
- Participants made fewer office visits than they had before entering the program, with workshop participants' visits declining the most. Visits to physicians for workshop participants declined by an average of approximately 2.4 visits per patient in the year; for all participants (workshop and group-visit patients) they declined approximately 0.4 visits in the year.
- Participants in group visits found the experience more helpful than did workshop attendees, but the latter improved more on the measured outcomes. On a 010 scale (with 0 equivalent to "not at all helpful" and 10 equivalent to "extremely helpful"), patients in groups rated program helpfulness at 8.4 and patients in workshops rated it at 7.6. According to the principle investigator, the fact that group-visit participants expressed greater satisfaction with the program despite receiving fewer benefits implies that there must be benefits from group visits that researchers did not identify or measure. Preliminary inquiry of group-visit participants suggests such benefits as shared experiences, diminished sense of isolation and mutual assistance. While the workshops taught ways of achieving many of the specified outcomes, the group visits explored other patient concerns.
The project produced a brochure, Are You Sick And Tired Of Your Health Problem? and a newsletter to introduce patients to the program and provide assistance to them in participating in it. Project staff gave presentations at national meetings (American College of Rheumatology and Canadian Arthritis Network), grand rounds and various meetings in the Kaiser Health System and at the National Institutes of Health. Much of the content of the self-management workshops is described in a book, Living a Healthy Life with Chronic Conditions, the 2nd edition of which was published during the course of the grant. (See the Bibliography for details.)
- Avoid untested assumptions about the willingness of patients to participate in a new health service program. Researchers found that patients were reluctant to participate in the program as originally designed for the following reasons:
- Many said that the demands of their work and the discomfort of disability of their disease denied them the time and energy for additional responsibilities.
- Despite the diagnosis of a chronic disease, some did not see themselves in need of further assistance.
- Some objected to the phrase "chronic disease"; they viewed themselves as not having a disease but rather a condition.
- Some were suspicious of the researchers' motives; they viewed the program as possibly shifting responsibility to them in order to save money for their health plan.
- Some asked to participate in the group visits at the outset before deciding about participation in the self-management education workshops.
- Some felt that they did not understand the benefits they might realize, and wished to have more information, especially personally from their physician. (Principal Investigator)
- An initiative that faces administrative disinterest or opposition can find other sources of support within an institution. This project unfolded at a time of administrative uncertainty at Stanford, particularly regarding the medical school's approach to education in primary care. The project's champions were able to build support among patients, primary care faculty and middle management, aiding the project's development. The principal investigator concluded that "introducing a new program that affects other people is a political process that requires specific attention and persistence." (Principal Investigator)
AFTER THE GRANT
The project and evaluation are ongoing. Future evaluations will include measures of physician satisfaction. Researchers have expanded the group-visit component of the project to a rheumatology specialty practice and have conducted groups with patients' spouses. The Stanford University School of Medicine is also offering clerkships to medical students in which students will attend, and be trained in, conducting workshops and group visits. In addition, researchers are considering ways to improve the quality of both self-management education and group visits and exploring ways to increase patient participation.
GRANT DETAILS & CONTACT INFORMATION
Creation of a Chronic Disease Management System for Primary Care Practice
Stanford University School of Medicine (Stanford, CA)
Dates: February 1998 to April 2002
Halsted R. Holman, M.D.
(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)
Lorig K, Holman HR, Sobel D, Laurent D, González V and Minor M. Living a Healthy Life with Chronic Conditions, 2nd Edition. Palo Alto, Calif.: Bull Publications, 2000.
Stanford University School of Medicine. Are You Sick And Tired Of Your Health Problem? (brochure). Stanford, Calif.: Stanford University School of Medicine.
Report prepared by: Robert Crum
Reviewed by: Robert Narus
Reviewed by: Molly McKaughan
Program Officer: C. Tracy Orleans