Perspectives from Patients and Providers

Introduction

Patients who are diagnosed with herpes are provided with varying levels of educational counseling and emotional support from their health care doctor/clinician/provider to deal with this complex disease. Funded by the American Herpes Foundation (AHF) in 2000, with additional support from GlaxoSmithKline (GSK) in 2001, this project was designed in two phases. First, a thorough review of the literature was summarized to provide an overview of what is known about herpes education/counseling. This "white paper" was used to inform patient and provider surveys. Data from these surveys informed an outline for a patient education/counseling curriculum.

Objectives

The goals of the American Social Health Association (ASHA) were to:

1. Ascertain what is known regarding herpes education and counseling;
2. Assess the perception of current care from the patient perspective; and,
3. Assess the perception of current care from the healthcare provider perspective; and,
4. Develop recommendations for educational and counseling topics that are essential to include when patients are diagnosed with genital herpes.

Activities

• Summarized the current literature with regard to herpes education/counseling and diabetes patient education;
• Designed, pre-tested, revised and administered a survey to 10,000 participants regarding current care and recommended care;
• Surveyed healthcare provider/experts using a modified Delphi technique to collect current care data and recommendations;
• Analyzed data using qualitative and quantitative methodologies; and
• Disseminated findings through reports, presentations, and manuscript submissions.

Outcomes

Research findings were presented at numerous local, national and international conferences and published (or in review), as follows:

Review

Schulz, SL, Gilbert, LK. & Ebel, C. Disclosure of Genital Herpes Infection and Psychosocial Health: Perspectives from Two Studies.

2002

Gilbert, LK. Schulz, SL & Ebel, C. Education and counseling for genital herpes: Perspectives from patients. Herpes, 9:3.

2002

Schulz, S., Gilbert, L. Ebel, C., Ford, K. Genital herpes: What do patients want? 2002 National STD Prevention Conference, San Diego, CA, March.

2001

Gilbert, L., Schulz, SL., Ebel, CW. Genital herpes education and counseling: what are providers providing. International Congress of Sexually Transmitted Infections, Berlin, Germany, July.

2000

The herpes patient educator/counseling project. ISSTDR: STI's in the Millennium, Baltimore, MD, May.

Contact Information

This project is completed. If you would like to let us know how this research or any of the associated resources have been used in your work, please contact us at info@ashastd.org.

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