SummaryIn an HIV/AIDS patient engagement pilot study, predominantly rural, low-income, African-American HIV patients who had been absent from care (or at risk of becoming disengaged) received regular, self-written text message reminders on a cell phone (provided free of charge) that encouraged them to regularly access HIV/AIDS primary care, including taking medications, keeping clinic appointments, and refilling prescriptions. While participants could receive calls from anyone, the phone allowed outbound calls only to predetermined health care providers and health-related and social service organizations. During the small, 6-month pilot study, individuals receiving cell phones experienced a significant improvement in quality of life. They were also more likely to remain in care than a group of similarly disengaged patients who would have been eligible for the study but returned to care after study enrollment ended and moderately more likely to remain in care than a formal study control group.Moderate: The evidence consists of pre- and post-implementation comparisons of quality of life, along with results from a small, RCT pilot that compared care retention rates over a 6-month period in three groups—14 program participants, 8 similar patients comprising a formal study control group, and 32 similar patients who returned to care after study enrollment ended and hence could not enroll in the study (known as the "usual-care" group).
Developing OrganizationsUniversity of Virginia Health System
Date First Implemented2008
Vulnerable Populations > Rural populations
Problem AddressedPersonal factors, inadequate community infrastructure, and insufficient case management often prevent low-income, uninsured, rural HIV/AIDS patients from adhering to their medication regimen and fully engaging in their care.1 As a result, they face increased risk of antiretroviral therapy failure and death.2
- Numerous personal factors that limit adherence and engagement: Numerous personal factors, including fears related to treatment, lack of understanding about the need for regular HIV care (even when feeling well), discomfort with the provider(s) of care, and mental health and substance abuse issues frequently prevent patients from adhering to their treatment regimen and fully engaging in their care.
- Inadequate community infrastructure and case management: Problems finding permanent housing, limited access to transportation, and lack of employment opportunities also make it difficult for low-income, rural HIV/AIDS patients to fully engage in their care regimen. In addition, rural clinics often do not have the resources necessary to maintain contact and coordinate the full range of medical and behavioral health services that patients require.
- Leading to increased risk of antiretroviral therapy failure and death: Appointment non-adherence has been associated with antiretroviral therapy failure (failure to reach undetectable levels), clinical disease progression (including AIDS-defining illnesses), and death.2 For example, newly diagnosed patients who miss a clinic visit within the first year after diagnosis are roughly twice as likely to die as those who attend all appointments.3
Description of the Innovative ActivityIn a 6-month pilot study, predominantly low-income, rural, African-American HIV patients who were disengaged from care (or at risk of becoming disengaged) received regular, self-written text message reminders on a cell phone (provided free of charge) that encouraged them to regularly access HIV/AIDS primary care, including taking medications, keeping clinic appointments, and refilling prescriptions. While participants could receive calls from anyone, the phone allowed outbound calls only to predetermined health care providers and health-related and social service organizations. Key program elements are described below.
- Identifying disengaged and at-risk patients: Program staff used patient records to identify those who had been disengaged from care (or who appeared at risk of becoming disengaged). Eligible patients included those who had been absent from care for more than 6 months or had missed more than four consecutive appointments.
- Creating text message reminders: Based on the goals of their HIV/AIDS care, patients worked with their provider to develop their own messages and selected the time(s) for delivery. Messages ranged from, "Get your ass up and take your 5 meds" to "Jesus loves you."
- Training patients, programming messages and outbound calls: Assigned providers spent approximately 20 minutes training each participant on use of the phone and approximately 10 minutes programming the text messages and outgoing calls. The phone allowed only certain outbound calls, including to social workers (case managers), physicians, and other health care providers; the clinic; a pharmacy; employment agencies; housing offices (for those needing temporary shelter); and an emergency contact chosen by the patient.
- Regular text messages: A Web-based automated program delivered the text messages to each patient, with the typical participant receiving 14 reminders each week.
- Outgoing call logs: Each patient kept a log of all outgoing calls.
Context of the InnovationThe Ryan White Program at the University of Virginia Infectious Disease Clinic serves 52 counties in rural western Virginia. Funded through a Ryan White grant from the Health Resources and Services Administration HIV/AIDS Bureau, this program seeks to expand and enhance access to HIV primary care. The clinic serves approximately 670 patients with HIV/AIDS, providing both treatment and medication monitoring. Program leaders became interested in testing this program because of high disengagement rates among HIV/AIDS patients, which were exacerbated by high rates of poverty, low educational attainment, lack of insurance, and stigma. Dr. Dillingham conceived of the idea of using cell phones as a tool for engagement, based on her work with HIV/AIDS patients in Haiti, where such phones represented the only way to maintain contact with patients. Her experience suggested that this type of approach could improve access to services, medication adherence, and attendance at appointments.
ResultsDuring the small, 6-month pilot of the program, individuals receiving cell phones experienced a significant improvement in quality of life. They were also more likely to remain in care than a group of similarly disengaged patients who would have been eligible for the study but returned to care after study enrollment ended, and moderately more likely to remain in care than a formal study control group.
Moderate: The evidence consists of pre- and post-implementation comparisons of quality of life, along with results from a small, RCT pilot that compared care retention rates over a 6-month period in three groups—14 program participants, 8 similar patients comprising a formal study control group, and 32 similar patients who returned to care after study enrollment ended and hence could not enroll in the study (known as the "usual-care" group).
- Improved quality of life: Program participants experienced a statistically significant improvement in quality of life, as measured by a pre-and post-implementation assessment item that asked them to rate their health-related quality of life on a scale of 1 to 100.
- Greater retention in care: In this small, pilot randomized controlled trial (RCT), 88 percent of program participants remained in care for the 6-month duration, well above the 59 percent of similar patients who returned to care after study enrollment ended and hence could not enroll (known as the "usual-care" group), and moderately above the 80 percent of those in a formal control group who completed study instruments but did not receive a phone or text messages. Although data analysis did not demonstrate statistical significance between the intervention and control groups, program leaders believe that simply participating in a formal study, even as a member of the control group, may have encouraged individuals to become more engaged in their care. (The study control group spent substantial time with staff at enrollment, and had contact, at least by phone, at 18 weeks and 30 weeks, including a 30- to 60-minute exit interview at 30 weeks.)
- Positive patient feedback: Feedback provided during a semi-structured debriefing with a psychologist, reflected extremely positive patient feelings about how having a cell phone can increase one's self-esteem, give an individual hope, and encourage someone to want to take care of themselves.
Planning and Development ProcessKey steps included the following:
- Obtaining support from clinic leaders: Researchers from the university contacted clinic leaders to discuss the project's feasibility and received their full support for implementation.
- Obtaining in-kind support: Before applying for funding, researchers obtained in-kind support for the cell phones, cell phone service, and automated text messaging service from nTelos (the current phone system provider for the university), and Silverchair, a company that was supporting another research project at the university.
- Designing program and submitting grant proposals: Once the in-kind support had been obtained, researchers designed the pilot program and applied for grant funding to support it.
- Introducing project to clinic staff, running pilot test: Researchers led an in-service program for clinic staff to describe the program and teach staff to use and program the phones.
- Conducting future research: On study completion, the team is planning a follow up study with 70 individuals randomized between two groups to develop a mobile phone intervention to assess and target HIV treatment adherence and drug use.
Resources Used and Skills Needed
- Staffing: The program did not require additional staff in the clinic. However, during the pilot study, the project director and a nurse practitioner devoted 20 percent of their time to the project; a registered nurse spent 10 percent of her time providing research support; and a social worker dedicated 10 percent of her time to outreach. Three graduate students also provided in-kind support, performing data collection and analysis.
- Costs: During the 6-month pilot, the estimated value of the donated services totaled $21,500, including $20,000 for text messaging and $1,500 for the donated phones and phone service.
Funding SourcesUniversity of Virginia School of Nursing, Rural Health Care Research Center
The project received a $25,000 research grant from the University of Virginia School of Nursing, Rural Health Care Research Center (sponsored by the National Institutes of Health), along with a $5,000 grant from The Donohoe Fund, a private foundation. As noted, nTelos, and Silverchair provided in-kind support.
Getting Started with This Innovation
- Consider benefits of personalized messages: Although computerized text messaging programs exist, participants universally agreed that using personalized messages made a major difference in how they felt about and responded to the texts.
- Ensure reliable service: Cell phone service in rural areas can be unreliable. Consequently, would-be adopters need to confirm the availability of reliable service in the areas in which patients reside.
- Set up mechanism to track receipt of messages: To adequately evaluate program effectiveness, would-be adopters need to be able to monitor whether patients read their text messages.
Sustaining This Innovation
- Seek long-term funding sources: This type of program requires ongoing, sustainable funding to pay for cell phone and Web-based text messaging services.
- Think of program as part of comprehensive effort: The use of cell phones can be an effective tool for engaging HIV/AIDS patients in their care. However, to optimize effectiveness, they should be integrated into a comprehensive program that addresses the many factors affecting the engagement and retention of these patients.
- Change text messages as necessary: To maintain the program's motivational impact, consider discussing with patients on a periodic basis whether it would be useful to change their text messages.
Contact the InnovatorRebecca "Becca" Dillingham, MD, MPH
Center for Global Health Assistant Professor of Medicine and Public Health Sciences
Division of Infectious Disease and International Health
University of Virginia Health System
Phone: (434) 982-0103
Fax: (434) 924-0075
Innovator DisclosuresDr. Dillingham has not indicated whether she has financial interests or business/professional affiliations relevant to the work described in this profile; however, information on funders is available in the Funding Sources section.
References/Related ArticlesMallinson RK, Rajabiun S, Coleman S. The provider role in clinical engagement in HIV care. AIDS Patient Care STDs. 2007;21(Suppl 1):S77-84. [PubMed]
Mugavero MJ, Lin HY, Allison JJ, et al. Racial disparities in HIV virologic failure: do missed visits matter? J Acquir Immune Defic Syndr. 2009;50(1):100-8. [PubMed]
Schackman BR, Ribaudo HJ, Krambrink A, et al. Racial differences in virological failure associated with adherence and quality of life on efavirenz-containing regimens for initial HIV therapy. J Acquir Immune Defic Syndr. 2007;46(5):547-54. [PubMed]
1 Corwin MA, Bradley-Springer L. Retention in HIV care: a guide to patient-centered strategies, Mountain Plains AIDS Education & Training Center, 2011.
Giordano TP, Gifford AL, White AC, et al. Retention in care: A challenge to survival with HIV infection. Clin Infect Dis. 2007;44:1493-9. doi:10.1086/516778 [PubMed]
Mugavero MJ, Lin HY, Willig JH, et al. Missed visits and mortality among patients establishing initial outpatient HIV treatment. Clin Infect Dis. 2009;48:248-56. doi:10.1086/595705 [PubMed]
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Original publication: November 23, 2011.
Original publication indicates the date the profile was first posted to the Innovations Exchange.
Last updated: November 20, 2013.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.
Date verified by innovator: October 18, 2012.
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