February 2007

Grant Results

SUMMARY

In 2001–05, researchers at Stanford University School of Medicine conducted a randomized, controlled study of the use of an Internet Chronic Disease Self-Management Program. A total of 958 people with heart disease, chronic lung disease or type 2 diabetes participated.

Key Findings

  • Four health indicators showed statistically significant improvement at one year for study participants who used the Internet program, compared with those who received only usual medical care:
    • Shortness of breath (also significantly improved at six months).
    • Distress related to the disease.
    • Fatigue.
    • Pain/physical discomfort.
  • Four health behaviors showed greater improvement at six months and at one year for users of the Internet program than for participants receiving only usual care:
    • Stretching and strengthening exercise (statistically significant at both timepoints).
    • Use of cognitive symptom management techniques (statistically significant at six months).
    • Use of techniques to improve communication with health care providers (statistically significant at six months).
    • Aerobic exercise (not statistically significant at either timepoint).
  • There were few significant differences between the group participating in the Internet intervention and participants from two similar, non-Internet, interventions using small groups in face-to-face meetings.

Funding
The Robert Wood Johnson Foundation (RWJF) provided an unsolicited grant of $528,730 to Stanford University School of Medicine to support the study.

 See Grant Detail & Contact Information
 Back to the Table of Contents


THE PROBLEM

The medical profession has used computers for patient education for more than a decade, according to researchers at Stanford University School of Medicine. As access to the Internet and e-mail use have expanded, the potential for computer-based patient education has grown, with disease-specific e-mail discussion groups and bulletin boards becoming increasingly popular.

Over more than two decades, Stanford researchers developed, evaluated and refined low-cost, community-based self-management regimens for people with arthritis and other chronic conditions. As cited in journal articles from 1985, 1993 and 1999, the Stanford Chronic Disease Self-Management Program — a series of two-hour group sessions in community sites led by trained lay leaders using a detailed protocol — demonstrated significant improvements for participants in health behaviors and health status as well as reduced health care utilization.

The Internet offered a new venue for the Chronic Disease Self-Management Program, which would allow the regimen to reach a larger percentage of the patient population at a relatively low cost. Stanford researchers designed an Internet Chronic Disease Self-Management Program (information on it is available online), with funding from the Archstone Foundation, based in Long Beach, Calif. Researchers then sought to evaluate the regimen's use by actual patients in a non-research setting.

 Back to the Table of Contents


RWJF STRATEGY

RWJF has had a longstanding interest in improving the quality of health care for the chronically ill by improving chronic illness care through the use of evidence-based disease management protocols or algorithms. RWJF has long supported the realization of this promise through its support of the Texas Medication Algorithm Project (TMAP) (see Grant Results on ID# 039931). It has also supported projects that use the Internet as a tool to assist patients in the management of their conditions. Health-e Technologies: Building the Science of eHealth is designed to develop efficacious interactive health programs on health behavior change and disease management by evaluating promising new interventions and providing the evidence base and knowledge needed to build better interventions.

New Health Partnerships: Improving Care by Engaging Patients (2005) is an example of another RWJF focus, on the individual patient (or consumer) and his/her choices. Other examples include Care Research Networks (2002); Prescription for Health (2002); Promoting Healthy Behaviors in Primary Care Research Networks (2002); and Enabling Consumers, Employers and Public Payers to Make Informed Decisions About the Purchase and Management of Health Care Benefits.

Beginning in 2006, RWJF began seeking to accelerate performance improvement on nationally adopted measures of outpatient chronic care quality through local market demonstrations.

 Back to the Table of Contents


THE PROJECT

In 2001–05, Stanford researchers designed and conducted a randomized, controlled study of the use of the Internet Chronic Disease Self-Management Program.

Intervention Description

The intervention included:

  • Password-protected interactive Web-based instruction.
  • Web-based bulletin board discussion groups.
  • A book entitled Living a Healthy Life with Chronic Conditions.

Content of the intervention included information on/design of:

  • Individualized exercise plans.
  • Cognitive symptom management plans.
  • Methods for managing negative emotions such as anger, fear, depression and frustration.
  • Medications.
  • Aspects of physician-patient communication.
  • Healthy eating.
  • Fatigue management.
  • Techniques for solving problems that result from living with a chronic disease.

Over six weeks, researchers asked participants — who they grouped into "workshops" of about 25 members each — to log on to the self-management site at least three times weekly (for a total of one to two hours per week) and engage in the week's activities. Typical activities were:

  • Reading that week's new Web content.
  • Posting an action plan and any comment or problem on the online bulletin board.
  • Checking in with a fellow participant via e-mail. Completing self-tests and activities.

Two trained peer moderators participated in each workshop, modeling participant behavior and assisting participants.

Methodology

Researchers recruited subjects through established Web sites, discussion groups, calendar announcements and newspaper articles. Study participants gave informed consent and were 18 years of age or older with a diagnosis of heart disease, chronic lung disease or type 2 diabetes and had not been in active treatment for cancer for one year.

Researchers randomly assigned participants to one of two groups:

  • The intervention group (457 people) — received usual medical care and participated in the Internet Chronic Disease Self-Management Program.
  • The control group (501 people) — received usual medical care but did not participate in the Internet Chronic Disease Self-Management Program.

All participants were asked to complete questionnaires at six months and one year after study enrollment. At six months, 353 intervention and 430 control participants completed the questionnaire. At one year, 354 intervention and 426 control participants completed the questionnaire. The questionnaire addressed:

  • Seven health-related quality-of-life measures:
    • Pain/physical discomfort.
    • Shortness of breath.
    • Fatigue.
    • Illness intrusiveness; i.e., effect of the chronic disease on work, recreation and social activities.
    • Distress related to the disease.
    • Overall health.
    • Disability.
  • Four health-related behaviors:
    • Stretching and strengthening exercise.
    • Aerobic exercise.
    • Use of cognitive symptom management techniques.
    • Use of techniques to improve communication with health care providers.
  • Three self-reported utilization measures:
    • Outpatient visits to physicians.
    • Emergency room visits.
    • Nights in hospital.
  • Perceived self-efficacy, i.e., the patient's confidence in managing his or her disease.

Researchers also compared the findings from this study to outcomes for two similar previous interventions using small group face-to-face meetings rather than the Internet.

Researchers had originally planned to study subjects' use of and satisfaction with the Web site and materials. The time and expense needed for the evaluation study was much greater than anticipated and prevented project staff from conducting the additional studies.

Software incompatibility also necessitated cancellation of plans to evaluate the effects of the Self-Management Program when integrated into the Web site of a major health maintenance organization.

Key Solutions, Inc., an information technology services firm located in Santa Clara, Calif., provided ongoing technical support for the self-management intervention software, under a subcontract. Stanford Medical Center's Office of Information Technologies also provided in-kind support.

 Back to the Table of Contents


FINDINGS

Researchers reported the following findings in an article in Medical Care entitled "Internet-Based Chronic Disease Self-Management: A Randomized Trial":

  • Four health indicators showed statistically significant improvement at one year after enrollment for study participants who used the Internet program, compared with those who received only usual medical care:
    • Shortness of breath (also significantly improved at six months).
    • Distress related to the disease.
    • Fatigue.
    • Pain.
  • The four health behaviors studied showed greater (though not in every case statistically significant) improvement at six months and at one year for users of the Internet program than for participants receiving only usual care:
    • Stretching and strengthening exercise (statistically significant at both timepoints).
    • Use of cognitive symptom management techniques (statistically significant at six months).
    • Use of techniques to improve communication with health care providers (statistically significant at six months).
    • Aerobic exercise (not statistically significant at either time point).
  • There were no significant differences between the two groups for any of the medical care utilization measures at either six months or one year.
  • Participants who used the Internet program reported greater self-efficacy than those who received only usual care at both six months and one year. The differences were not statistically significant, though at one year showed a strong trend toward significance.
  • Increased self-efficacy at six months was significantly associated with improved health status outcomes at one year, in the following categories:
    • Level of pain.
    • Shortness of breath.
    • Fatigue.
    • Disability.
    • Illness intrusiveness.
    • Distress related to the disease.
    • Overall general health.
  • There were few significant differences in outcome between participants in the Internet intervention and those of two similar, previous interventions using small groups in face-to-face meetings rather than the Internet.

The project director included information about the study and its findings in presentations to meetings for organizations such as the National Council on Aging, the Alaska State Department of Health, the Oregon State University Aging Conference, the National Self-Management Conference in Denmark and the National Health Service in Norway.

Researchers presented information about the Self-Management Program to all Medicare Health Plans in California via WebEx (an online conferencing service) and to 200 major employers and health plans throughout the United States via telephone conference.

 Back to the Table of Contents


CONCLUSIONS

In the Medical Care article already cited researchers stated the following conclusion:

  • Study findings suggest that the online program has long-term (one year) effects on health status outcomes and that the Internet mediated changes in participant behaviors during the first six months may be a contributing factor. Researchers point out that at six months the online program appeared to change health behaviors without significantly changing health statuses or health care utilization. But at one year, online participants had stronger improvements in level of distress related to their disease, fatigue, pain and shortness of breath, and a trend toward improvement in illness intrusiveness in comparison to usual care controls.

 Back to the Table of Contents


LESSONS LEARNED

  1. Invest in good design when offering patient education via the Internet. While Web content is important, good design is critical to patients successfully navigating and benefiting from an Internet-based program. Some Web designs look great but may not work educationally. In particular:
    • Design for the lowest technological/equipment level of expected users.
    • Ensure that the site is compliant with ADA (Americans with Disabilities Act) Standards for Accessible Design. (Project Director)
  2. Communicate clearly to programmers what you as researchers want. In addition, take steps to assure yourself that they are creating it, not what they imagine or assume will meet your research needs. (Project Director).
  3. Establish an adequate budget to cover programming costs. Good Web design requires good programming, and programming takes much longer and is more expensive than one might expect. Adequate funding is needed to support both initial programming during Web site development (which includes built-in evaluation capability) as well as continuing programming assistance to keep the site up and running. (Project Director)
  4. Recruit subjects for an online intervention through links to other online sites. Researchers found this type of recruitment to be effective and relatively easy and it should be the main source of subjects. (Project Director)
  5. Seek the advice of relevant legal offices and review boards prior to submitting proposals for Internet-based research. Concerns of institutional review boards (groups designated to review and monitor research with human subjects) and HIPPA (the federal Health Insurance Portability and Accountability Act of 1996 that is concerned with the security and privacy of health data) need not become obstacles if researchers initiate contact before submission. (Project Director)

 Back to the Table of Contents


AFTER THE GRANT

As of August 2006, project researchers were working on a longitudinal study-in collaboration with researchers at the National Health Service in England — of 600 individuals using the Internet Chronic Disease Self-Management Program evaluated under this grant.

Also as of August 2006, researchers expected to do a replication study of the internet intervention in Australia. Research groups in New Zealand, the Netherlands and Denmark had also expressed interest in the Internet Chronic Disease Self-Management Program.

Using the software evaluated under this grant, researchers have created an online arthritis self-management program and, as of August 2006, planned to go online with a diabetes self-management program funded by the National Institutes of Health.

The Internet Chronic Disease Self-Management Program is available for licensing in the United States.

 Back to the Table of Contents


GRANT DETAILS & CONTACT INFORMATION

Project

Evaluation of the Internet-Based Chronic Disease Self-Management Program

Grantee

Stanford University School of Medicine (Stanford,  CA)

  • Amount: $ 528,730
    Dates: September 2001 to January 2006
    ID#:  038198

Contact

Kate R. Lorig, R.N., Dr.P.H.
(650) 723-7935
lorig@stanford.edu

 Back to the Table of Contents


BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Articles

Lorig KR, Ritter PI, Laurent DD and Plant K. "Internet-Based Chronic Disease Self-Management: A Randomized Trial." Medical Care, 44(11): 964–971, 2006. Abstract available online.

 Back to the Table of Contents


Report prepared by: Mary B. Geisz
Reviewed by: James Wood
Reviewed by: Marian Bass
Program Officer: Robin E. Mockenhaupt

Most Requested