Helping People Living with HIV Learn Skills to Manage Their Care

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What was the research about?

Patients who feel confident that they can manage and improve their health often have better health outcomes than patients who are not as confident. Patients with complex health problems such as HIV can benefit from learning skills to manage their health. These skills include carefully monitoring symptoms, taking medicine as prescribed, and tracking side effects.

In this study, the research team created a program for patients with HIV to improve skills for managing their health. The program included an iPod app, group-based training, a meeting with a health coach, and training for doctors.

What were the results?

Compared with those who weren’t in the program, patients in the program

• Felt more able to manage their health
• Could find health information online and understand how to apply the information to their own care

The program did not affect whether patients took their medicine as prescribed or whether they felt involved in their care. It didn’t affect patients’ health and well-being or the preventive care the patients received. It also didn’t affect the amount of virus in patients’ blood.

Who was in the study?

The study included 360 adult patients with HIV living in New York and New Jersey. Patients were from diverse backgrounds. The average patient age was about 51. About half of the patients had never used an iPod.

What did the research team do?

The research team recruited patients from eight clinics in New York and New Jersey. The team assigned the patients to one of two groups by chance. One group was in the program; the other was not. Patients in the program received an iPod with a health-record app designed for people with HIV. The team trained patients to use the iPod and to put health data into the app, and the team encouraged patients to take the iPod to their next doctor visit. Health coaches helped patients in the program prepare for their next visit with their doctor. Patients receiving usual care visited their doctors as they normally would.

The team trained doctors treating patients in both groups to help patients feel more confident about managing their health care.

Patients with HIV, HIV doctors, staff from two HIV service organizations, and other healthcare providers gave input about how to do the study.

What were the limits of the study?

Many patients in the study had no detectable level of HIV, which made it hard for the research team to see a change in HIV level. Patients in the program met with a health coach only once, and the research team measured results after patients in the program had seen their doctor just once. The program may not have been enough for patients to make a change in health or health care. The study took place only in two states; the results may not apply to patients in other places.

Future research could have patients meet with a health coach more than once and measure results after more than one doctor’s visit.

How can people use the results?

Health centers and doctors could use this program to help HIV patients feel more able to manage their health and find health information online and apply it to their own care.

Objective

To compare the effect of a web-enabled, iPod-based intervention called Get Ready and Empowered About Treatment (GREAT) plus usual care versus usual care alone on patient activation among people living with HIV

Study Design

The research team recruited 360 patients from diverse backgrounds from three HIV practices and five federally qualified health centers in New York and New Jersey. The average patient age was about 51. About half of the patients had never used an iPod before.

The research team randomly assigned patients to receive the GREAT intervention plus usual care or to receive usual care alone. The team provided the GREAT intervention group with web-enabled iPods loaded with an electronic personal health record (ePHR) program customized to the needs of people with HIV. The program included drop-down menus for common HIV medications and common lab tests with brief explanations. Patients could enter their own health data into the ePHR. Patients in the intervention group attended six 90-minute group training sessions that taught participants how to use the iPod and search the internet for health information. Staff and peer trainers encouraged patients to take their iPods to HIV medical appointments. A majority (84%) of intervention patients attended at least one group training session; patients attended an average of 3.6 training sessions. Patients in the usual care group visited their clinicians as normal.

The research team directed intervention-group patients to meet with a health coach once individually to prepare them for their next HIV clinician office visit. A majority (76%) of these patients met with a health coach. Additionally, the research team provided clinicians in both the intervention and usual care groups with one 60-minute training session on supporting patient activation.

The research team developed the intervention with input from patients, HIV medical directors, HIV service organization representatives, HIV outreach workers, and clinicians.

Results

Patients receiving the GREAT intervention had significantly greater improvement in patient activation (p=0.0271; 2.82; 95% confidence interval [CI] 0.32, 5.32) than patients in the usual care group. Patient activation is a measure of patient knowledge, skill, and confidence for self-care. The intervention group also had significantly greater improvement in electronic health literacy (p<0.0001; 2.67; 95% CI 1.38, 3.95) and patient involvement in care (p=0.0038; 1.27; 95% CI 0.41, 2.13) than the usual care group.

Compared with the usual care group, the intervention group did not have statistically significant improvements in patient decision-making self-efficacy, health status and quality of life, patient-reported adherence to antiretroviral therapy, viral suppression, or receipt of evidence-based care.

Limitations

Seventy-five percent of patients in the study had no detectable viral load at baseline, which may have made it difficult to detect the intervention’s effect on viral suppression.

Follow-up after a single health coaching session and clinician visit may not be enough to detect improvements in evidence-based care.

The study took place in two states. The results may not be generalizable to other geographic locations.

Conclusions and Relevance

The web-enabled, iPod-based patient-activation program for people with HIV improved patient activation and electronic health literacy compared with usual care.

Healthcare organizations that provide care to people with HIV may consider using this program to help patients attain higher electronic health literacy and feel more activated in their care.

Future Research Needs

Future research could implement this intervention with patients without viral suppression at baseline. Future research could also incorporate additional training modules that address lifestyle factors, including nutrition, physical activity, and use of apps that support these.