Retention Challenges for HIV-Infected Primary Care Patients 2001-2004 [United States] (ICPSR 22220)

Principal Investigator(s): Bradford, Judith B., Fenway Community Health, and Virginia Commonwealth University; Grasso, Chris, Fenway Community Health; Coleman, Sharon, Fenway Community Health


This project examined HIV-infected patients who were lost to follow-up during calendar years 2001-2004 in order to identify reasons patients were leaving care. Sustaining and retaining HIV-infected patients in care has been a consistent challenge to primary care health systems. Continuity, enhancing wellness, and patient engagement are long-term goals in primary care. Factors that influence clients to disengage from care frequently result in patterns of episodic utilization that may compromise the patient's health status and increase their psychosocial vulnerability. The standard of care suggests that HIV-infected patients return for medical follow-up primary care visits four times a year. Since 2001, there have been over 495 patients that have been determined inactive. The project administered telephone and mail surveys to HIV-infected patients that no longer receive care at Fenway Health Center. The survey includes demographic questions, insurance questions, potential reasons for stopping care, and whether the participant is receiving care at another facility. Subsequently, the project connected interviewees into the Health System Navigation (HSN) Project to assist them with seeking HIV medical care. This was accomplished by including prescreener questions in the survey. If a patient is determined to be eligible, they will be invited to participate in the HSN Project.

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Study Description


Bradford, Judith B., Chris Grasso, and Sharon Coleman. Retention Challenges for HIV-Infected Primary Care Patients 2001-2004 [United States]. ICPSR22220-v1. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2010-08-30.

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This study was funded by:

  • United States Department of Health and Human Services. Health Resources and Services Administration. HIV/AIDS Bureau (H97HA00191-05-07)

Scope of Study

Subject Terms:    AIDS, bisexuality, disease, gay community, gays and lesbians, health care, health care access, health care delivery, health care services, health services utilization, HIV, homosexuality, medical care, mental health services, patient care, physician availability, physician choice

Geographic Coverage:    Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, United States, Vermont

Time Period:   

  • 2001--2004

Date of Collection:   

  • 2004--2006

Unit of Observation:    individuals

Universe:    All individuals aged 18 and older living in 6 New England states.

Data Type(s):    survey data

Data Collection Notes:

The survey was completed by 179 of the 495 originally sampled. Several methods were employed to find the inactive patients including searches of the Internet, the registry of motor vehicles, criminal records, and the Social Security Death Index. The health center where the sample originated is referred to as Fenway Health Center in the data set. Particpants completing the survey where evaluated for eligiblity to receive services called Health System Navigation to assist the participant in reengaging in care.


Sample:    An initial population of 495 HIV-infected individuals, who had been receiving medical care at the clinic, were selected as potential survey respondents due to their inactive medical utilization status. The sample was identified by searching the clinic's electronic medical record system. A patient was defined as inactive if they had not received an HIV primary medical care visit for one year or longer. Researchers examined a cohort who had been lost to followup over the course of four years that included calendar years 2001, 2002, 2003, and 2004. Eligible survey participants were 18 or older, HIV-infected, were not incarcerated during the interview period, their contact information was up to date, and they were determined to be inactive patients at the clinic.

Mode of Data Collection:    mail questionnaire, telephone interview

Data Source:



Original ICPSR Release:   2010-08-30

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