Genesis and Evolution of A Telehealth Program: Rural Families with At-Risk Teenagers with Epilepsy

A Talk with Robert L. Glueckauf, Ph. D.

University of Florida, Florida, USA

The following interview took place in August, 2000.
Assistant Editor & Roving Reporter TelehealthNet News
Bob Pyke, Jr. RN, CPNP

First off, tell me about how you became involved in Telehealth?

The primary reason I became involved in telehealth was to find a potential solution for the long-standing problem with attrition in our intervention studies for families with teenagers with seizure disorders. Over 50% of the families who had expressed an interest in our National Institute on Disability and Rehabilitation Research (NIDRR) funded program did not attend the first assessment session. Reasons for low attendance included the high costs of long distance car travel and lost wages due to missed work. My first telehealth study was a pilot project that evaluated the effects of home-based family videoconferencing for adolescents with uncontrolled seizures disorders.

Tell me about your work at the University of Florida, your program, and how it evolved?

In August 1998, I moved to the University of Florida to direct the Center for Research on Telehealth and Healthcare Communications, which was the first psychology-based telehealth research center in the country. Initial support for the Center was obtained from the Arthur Vining Davis Foundation, the Healthcare Corporation of America, and the University of Florida College of Health Professions. Currently, we are working on several projects. They include:

  • assessing the differential impact and cost effectiveness of home based video, home-based speakerphone, and office based counseling on the level of improvement, severity, and frequency of specific problems identified by at risk teenagers with epilepsy and their parents
  • assessing whether home-based booster sessions delivered using videoconferencing technology lead to improvements in rehabilitation performance beyond those obtained from standard clinic treatment for veterans with stroke and dementia
  • providing a statewide, Internet-based, on-line support and information network and an 800 telephone hotline to ensure easy and rapid access to pertinent care-giving information and healthcare services for persons with dementia
  • providing telehealth-based brief depression treatment to patients served at the Hamilton County Health Department

How many teenagers are in the NIDRR program?

Thirty-nine teenagers with seizure disorders and their families have participated in the Midwest phase of the NIDRR project. An additional 21 families have been recruited thus far from Florida, Georgia, and Alabama. We hope to involve 95 families in total over the 4-year intervention project.

How broad is the community you service?

We provide service to families with teenagers with epilepsy from rural areas as far as 250-300 miles away from the University of Florida campus, which is located in Gainesville, FL.

What has been the parents' initial reaction to the program and how has that changed?

The reaction, which has not changed over time, has been very positive.

How has the medical community reacted to the program? Has there been more resistance or acceptance?

The acceptance of the medical community has been very high. They recognize that the family intervention needs of rural teenagers with epilepsy are currently not being met. As a result, they are quite receptive to our videoconferencing research work.

Tell me about the technology you are using in your program.

We have employed a point-to-point solution for our rural teenagers with epilepsy project (i.e., 128 kbps ISDN-based Proshare 500 and Picture Tel Live 100 desktop videoconferencing units).

Since you have been involved with this program, what have been the results so far? Have there been any surprises?

On the Family and Disability Assessment System measures, teenagers and parents reported significant reductions in both severity and frequency of identified family problems across all three modalities from pre- to one-week post-treatment and from pre-treatment to the 6-month follow-up. On the Social Skills Rating System scales, parents and teachers reported significant reductions in problem behaviors at home and at school from pre- to the one-week post-treatment to the six-month follow-up. In addition, parents and teachers reported significant improvement in teen social skills across all three assessment phases. Consistent with previous telehealth research, mode of transmission did not differentially influence the outcomes of treatment. Significant and similar treatment gains were found across home-based desktop-video, home-based speakerphone, and face-to-face office counseling.

We also provided initial estimates of the costs of home-based video, home-based speakerphone, and office-based counseling for rural families. The per family costs for home-based videocounseling, home-based speakerphone, and office counseling were $2,400, $700, and $2,100, respectively. Our preliminary analysis suggests that costs of home-based videocounseling are similar to those of office counseling, but substantially greater than speakerphone costs by approximately a 3:1 ratio. We anticipate, however, that the costs of home-based videocounseling will substantially decrease over the next few years as a result of market competition.

Contrary to prediction, no substantial differences were found across conditions on completion of therapy homework assignments and number of missed appointments. We had anticipated that home-based video and home-based speakerphone would confer a substantial advantage in adherence to treatment as a result of their contextual proximity and high convenience.

How is the program currently funded?

The program is funded through a field initiated research grant from the National Institute on Disability and Rehabilitation Research (NIDRR).

Do you plan on expanding the program?

We are submitting a follow-up grant to NIDRR this October.

Telehealth has generated a lot of interest recently. What is your vision of telehealth now, one year from now, five years from now?

Telehealth applications are likely to expand significantly over the next five years, particularly in the use of IP home-based telehealth assessment, consultation, and intervention. Most of our current projects are 4 or 5-year endeavors that will focus on the development and evaluation of home-based telehealth technologies for individuals with chronic medical conditions (e.g., epilepsy, dementia, and stroke).

The Internet is changing everything these days, how do you see the Internet and telehealth interacting?

The Internet is likely to become the primary vehicle for the delivery of health care information and telehealth services over the next 10 years.

What do you say to your peers about telehealth and what advice can you offer?

I tend to be cautious in discussing the benefits of telehealth with my colleagues. My primary career goal is to bring science to the field of telehealth. Telehealth holds considerable promise as a vehicle for resolving thorny healthcare problems, such as limited access to healthcare services, high costs of specialty care, and treatment adherence difficulties. However, we have only recently begun to evaluate the efficacy, utility and cost-effectiveness of telehealth interventions. The jury is still out on the proposed benefits of telehealth. Over the next 5 to 10 years, we will be able to evaluate the first wave of large-scale randomized trials of telehealth services across a variety of health conditions. Only then, we will be able to speak more confidently about the strengths and limitations of this mode of healthcare delivery.

About the Interviewee:

Robert L. Glueckauf, Ph.D. currently teaches at the University of Florida, where he also is the Director of the Center for Research on Telehealth & Healthcare Communications. He is an Associate Editor for Rehabilitation Psychology and has served as President for APA Division 22 (Rehabilitation Psychology). Tel: 352-265-0680 x4-6880 Fax: 352-265-0468 E-mail: rgluecka@hp.ufl.edu