Dr. Virginia Carrieri-Kohlman is the Principal Investigator on the project entitled Comparing the Effects of an Internet-Based to an Established Dyspnea Self-Management Program on Dyspnea, Exercise Behavior, and Pulmonary Exacerbations in Patients with COPD at the University of California in San Francisco.

What is unique and/or innovative about your study?
This is the first study that we are aware of in the published literature to scientifically investigate the longitudinal effects of an Internet-based dyspnea self-management program (eDSMP) for patients with chronic obstructive pulmonary disease (COPD). Unlike other previous studies that have primarily employed usual care as a control group, this is the first time that an Internet-based program will be compared to a modified face-to-face program that has been shown to result in positive outcomes for the patients with COPD. We designed the eDSMP to include a face-to-face consultation at baseline with the intention that the program will be used in conjunction with the clinic care that patients normally (or ideally) receive for COPD. Based on findings from the eHealth literature, we believe that an integrated program as such which harnesses the Internet for ongoing support will yield better participation, adherence and stronger effects compared to other programs that are strictly confined to the Internet.

How is your project progressing so far?
The project has faced a number of administrative, fiscal and technological challenges. The technological challenges have been the greatest barrier to our progress. Nonetheless, we expect to enroll 12+ patients by the end of the month.

What prompted you to explore this research?
Approximately 67% of adults in the U.S. had Internet access in 2003 (Harris Poll) with those in the 50- 64 age range equally represented online as younger users. While access to this technology is not universal at this time, its effectiveness should be tested now to provide guidance in designing effective Internet-based applications for self-management for people with chronic symptoms. This is especially true given the recent projection that nearly half of the U.S. population will have at least one chronic condition by 2010. In addition, we had already shown that a face-to-face program was effective in decreasing dyspnea and this was an attempt to apply our findings and program to another medium that ultimately would reach more people.

How would a typical end-user utilize the final product/results of your research?
Because of the chronicity and the long-term task of self-management confronting most patients suffering from chronic dyspnea, a program that provides minimal and seamless support may prove to be remarkably valuable. This intervention can be used across the illness trajectory and could be particularly useful for patients who lack mobility and are home-bound near the end of life.

What are the greatest challenges in eHealth and more specifically, your project?
As suggested above, our challenges have been related to lack of finances and technological problems with our software vendor and purchasing a blackberry device that is “user-friendly” for the elderly and chronically ill patient. Our attempts at including real-time data collection and feedback using a wireless device have been faced with one obstacle after another, including selecting a device and wireless service that fits within our budget, configuring the device to work with an existing web platform and making modifications to the software to accommodate usability challenges with the particular device. It has been difficult to rely on an outside software vendor who does not follow usual guidelines of quality, fidelity and promptness that we have been used to in our previous work.

In what ways would you like to see eHealth evolve?
I’d like to see more programs that span chronic illnesses and illness trajectories so that patients are not forced to “choose” one illness to manage over another, as well as programs that include valid and reliable systems for monitoring multiple physiological and psychosocial variables in the patient’s daily life. Lastly, development of programs that can be accessed, used and studied by patients no matter where they are without having to bring them in for laboratory testing of outcomes or effectiveness.

How do you stay informed of advances and innovations in eHealth?
We attend conferences, meetings, develop a cadre of colleagues who are interested in the same phenomena, and keep up with reading the most current literature. These are the same functions and roles you would participate in for any scientific area of study.

Virginia, thank you for the update!

Stay tuned – we will hear about the Beth Israel Deaconess Medical Center project from Principal Investigator Dr. Lisa Iezzoni in April.