SPNS/Fax: An Electronic Report from HRSA/HAB's SPNS Cooperative Agreements:
Volume 2, Issue 25 (December 12, 1997)

This document has been superceded by our Online Knowledge Base on Innovative Models of HIV/AIDS Care. Click here to access the Knowledge Base. Click here to access descriptions of 27 Innovative Models of HIV/AIDS Care and the lessons learned from these projects. SPNS/Fax was written, published, and distributed by fax by The Measurement Group between 1995 and 1998.

Information dissemination from 27 Innovative Models of HIV Care projects funded as Special Projects of National Significance by the HIV/AIDS Bureau (HAB) of the Health Resources and Services Administration (HRSA).

Introduction

Welcome to SPNS/Fax: An Electronic Report from HRSA/HAB's SPNS Cooperative Agreements. In each issue of SPNS/Fax, we will highlight findings from the HRSA Special Projects of National Significance Program Cooperative Agreements. The projects have been funded to develop innovative models of HIV/AIDS care. SPNS/Fax reports are distributed every two weeks by fax machine to all subscribers. All issues of SPNS/Fax are also available at this Web site. Due to slight differences in the media, issues distributed by fax machine may appear slightly different from those posted on this Web site, but the content is identical.

Adherence to Protease Inhibitor Combination Therapy among Youth: Results from a Focus Group

A topic of great interest in today’s HIV/AIDS research arena is protease inhibitor therapy and whether such therapies improve the health and longevity of people living with HIV/AIDS. Many studies have been conducted on HIV infection and the effects of medication; however, very little research has focused on the experiences of adolescents and youth. Thus, the importance of specifically looking at protease inhibitors and youth led The Measurement Group to conduct a focus group in June 1997 with 11 youth with prior or current experience taking protease inhibitors.

The 11 focus group participants were all male, with an average age of 24.7 years. The participants were 54.5% Caucasian, 18.2% African American, 9.1% Hispanic/Latino, 9.1% Filipino, and 9.1% multi-racial. Some of the young people had tested HIV-positive as long as ten years ago, whereas others had tested HIV-positive last year. Most of the focus group participants (81.8%) first began using protease inhibitors within the last year, while the others (18.2%) started fifteen to seventeen months prior. Nine participants (81.8%) reported current use of the medications and two participants (18.2%) had discontinued their use.

The purpose of the group was to provide young people the opportunity to share their experiences and concerns about taking protease inhibitors in a way that has not been done in the past. Several questions were posed to the group to guide their discussion. Thus the discussions focused on current protease inhibitors/medications being taken, background information on how they started taking protease inhibitors as well as past HIV-related medications, protease inhibitor drug adherence, concerns regarding protease inhibitors, and positive and negative results of taking protease inhibitors.

Participants were taking several different combinations of medications. Length of time and consistent adherence to medications varied. The major reasons mentioned by the group for choosing to go on the medications initially are indicated in the box on the right.

Reasons Youth Began Taking Protease Inhibitor Therapies

  • Health status. Some started the drugs because they were beginning to experience symptoms that affected their well being and appearance.
  • Physician recommendations to start taking medications. Having doctors strongly suggest that they begin, coupled with friends and family urging them to start, had an effect on their decision.
  • Having friends who also were taking medications. Peer use was a strong influence on their decision to start taking the drug.
  • Fear. Seeing other HIV-positive people pass away and fearing what might happen if they did not start treating their condition encouraged most to begin therapy.
  • Media, television, newspapers, magazine articles. Ad campaigns and media images influenced some to believe that people were getting good results from protease inhibitors.

The discussions from this focus group also highlighted a number of key concerns regarding compliance, including: disclosure to friends, family, or even strangers; difficulty having a social life due to time and food constraints; the use of alcohol and drugs caused them to forget to take medications on time; constantly being reminded of one’s HIV status; and side effects. Most participants agreed that a primary strategy helping to improve medication compliance was development of a strong relationship between the health care provider and the young person. This relationship should start before treatment protocols begin to ensure that there will be open communication and honest discussion about taking medications in every possible aspect of the young person’s life — while dating, at parties, and the effect of other drug use.

The participants were asked to rate their health before and since taking protease inhibitors on a scale from 0 to 10 (0=worst possible health, 10=best possible health). On average, they stated that they were in relatively good health before (M=6.7), whereas they indicated being in very good health currently (i.e., since taking protease inhibitors; M=8.6). Regardless of the small sample size, the mean comparison of health indicators is statistically significant (t(10)=2.82, p<.02). Most participants reported feeling better, becoming more health conscious, having more energy, and often feeling a renewed commitment to life, as exemplified by one participant: "I spent the first year letting go of dreams and goals. I am now starting to plan for the future again." In this sample of young people there was a feeling that their lives have changed since taking protease inhibitors. These participants have shown that it is possible for young people to take protease inhibitors and follow the regimens successfully.

For a complete copy of "Adherence to Protease Inhibitor Combination Therapy Among Youth: A Report from a Focus Group on Issues for Youth Living with HIV," please contact The Measurement Group at 310.216.1051 or visit the web site at www.TheMeasurementGroup.com.

SPNS/Fax is produced by The Measurement Group–PROTOTYPES Evaluation and Dissemination Center (EDC). Editorial comments should be made to The Measurement Group at 5811A Uplander Way, Culver City, California 90230, 310.216.1051, 310.670.7735 (fax).
 

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