QUALITY OF CARE

Do You Know Where Your Patients Are?

Using an Active Patient List

Monitor Patient Retention In HIV Care And Improve Health Outcomes

The NYSDOH AIDS Institute’s ‘Do You Know Where Your Patients Are’ brochure presents information and tips help care providers address retention issues at their facility.

Benefits of Focusing on Patient Retention

Patient engagement in care is directly correlated with positive health outcomes. For people living with HIV/AIDS, regular medical visits facilitate treatment adherence and clinical monitoring, which consequently lead to improved viral load suppression, reduced occurrence of opportunistic infection, decreased odds of antiretroviral drug resistance, and reductions in mortality [1-4]. Patients who are engaged in regular medical care and become virologically suppressed are also less likely to transmit the virus to others, establishing retention as a key strategy for HIV prevention. Furthermore, patients with regular clinic visits are more likely to receive comprehensive care, including preventive care, reducing the frequency of hospitalizations and emergency department visits, and decreasing overall healthcare expenditures.

Monitoring Patient Retention

A key tool for monitoring patient retention is an active patient list: a record of every patient who visited your clinic for medical services within a given time period, often the previous 12 months. An up-to-date list provides the necessary information to:

  • Identify patients who have fallen out of care
  • Monitor patient attendance over time
  • Track individual patient attendance patterns
  • Measure the rate of patient retention at your clinic
  • Observe trends in patient retention and demographics

Frequently updating the active patient list allows you to dynamically monitor patient retention in your clinic for different time intervals, varying in duration and starting point. This flexibility allows you to focus on different aspects of patient retention and levels of patient engagement at your clinic. For example, your clinic may choose to update its active patient list quarterly, reviewing patient retention for a shifting 12-month interval each quarter, rather than just within a calendar year. In this case, patients that should be seen bimonthly but have become lost to follow-up, for example, would be identified sooner.

Ultimately, your clinic will be able to monitor the retention of a previously identified cohort of active patients longitudinally (e.g., 1 clinical visit in each 6-month interval of a 24-month period, or longer). This will allow you to monitor the same patients over an extended period of time to track retention more meaningfully and correlate retention with long-term health outcomes.

Helpful Tips:

  • Designate a person in your clinic to manage the patient list.
  • Orient staff to the importance of retention in care.
  • Systematize the process of regularly identifying patients lost to follow-up in the patient list.
  • Develop a routine method for updating your active patient list. Include such items as established update schedule, staff responsibility, data validation, and security.
  • Identify and access all data sources to obtain the information needed for your active patient list.
  • Regularly verify accuracy of your active patient list. Check for red flags. Are there obvious errors or omissions?
  • Implement a policy for designating patients as inactive. Decide whether a certain number of unsuccessful intervention attempts is sufficient to consider follow-up patients inactive.
  • Consider monitoring missed patient visits, which can provide additional information regarding patient retention at your clinic.
  • Incorporate enough elements to uniquely identify patients in your list. Include all dates of clinical visits in chronological order. In addition to this basic information, consider including elements such as contact, clinical, or other demographic information
Example Active Patient List
First Name Last Name Middle Initial Gender DOB Clinical Visit Date 1 Clinical Visit Date 2
John Doe B. Male 7/11/1977 9/23/11 2/12/12

Strategies for locating patients: If contacting a patient directly is unsuccessful, other resources for locating patients may include:

  • Internal: Registries for within-clinic services (e.g., mental health), electronic medical records (EMR) for hospitalization or death.
  • External: Other local clinics and support service providers, Social Security Death Index, state or local incarceration directory, local health department, case managers, pharmacies.
Intervention Examples
Telephone calls to patients as well as their friends and family, SMS (text) message appointment reminders, open access scheduling, counseling, mental health support, substance abuse treatment, transportation services, case management, peer and near-peer coaches or navigators, preemptive interventions for patients at high-risk for non-retention, secure message line for appointment requests (after-hours calls), collect/verify contact information regularly (telephone numbers, email, etc.).
References
  1. Berg MB, Safren SA, Mimiaga MJ, et al. Nonadherence to medical appointments is associated with increased plasma HIV RNA and decreased CD4 cell counts in a community-based HIV primary care clinic. AIDS Care 2005;17(7):902-907.
  2. Giordano TP, Gifford AL, White AC Jr, et al. Retention in care: A challenge to survival with HIV infection. Clin Infect Dis 2007;44(11):1493–1499.
  3. Mugavero MJ, Lin HY, Willig JH, et al. Missed visits and mortality among patients establishing initial outpatient HIV treatment. Clin Infect Dis 2009;48(2):248-256.
  4. Tripathi A, Youmans E, Gibson JJ, et al. The impact of retention in early HIV medical care on viro-immunological parameters and survival: A statewide study. AIDS Res Hum Retroviruses 2011;27(7):751-758.

Four Steps in Creating and Maintaining Your Active Patient List

Four Steps in Creating and Maintaining Your Active Patient List
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Selected Bibliography

Reviews

  • Gardner EM, McLees MP, Steiner JF, et al. The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection. Clin Infect Dis 2011;52(6):793-800.
  • Geng, EH, Nash, D, Kambugu, A, et al. Retention in care among HIV-infected patients in resource-limited settings: Emerging insights and new directions. Curr HIV/AIDS Rep 2010;7:234-244.
  • Horstmann E, Brown J, Islam F, et al. Retaining HIV-infected patients in care: Where are we? Where do we go from here? Clin Infect Dis 2010;50:752-761.
  • Mugavero MJ, Norton WE, Saag MS. Health care system and policy factors influencing engagement in HIV medical care: piecing together the fragments of a fractured health care delivery system. Clin Infect Dis 2011;52(suppl 2):S238-S246.
  • Mayer KH. Linkage, engagement, and retention in HIV care: essential for optimal individual- and community-level outcomes in the era of highly active antiretroviral therapy. Clin Infect Dis 2011;52(suppl 2):S205-S207.

Outcomes/Risk Factors

  • Berg MB, Safren SA, Mimiaga M J, et al. Nonadherence to medical appointments is associated with increased plasma HIV RNA and decreased CD4 cell counts in a community-based HIV primary care clinic. AIDS Care 2005;17(7):902-907.
  • Giordano TP, Gifford AL, White AC Jr, et al. Retention in care: a challenge to survival with HIV infection. Clin Infect Dis 2007;44(11):1493–1499.
  • Giordano TP, Hartman C, Gifford AL, et al. Predictors of retention in HIV care among a national cohort of US veterans. HIV Clin Trials 2009;10(5):299-305.
  • Moore RD, Bartlett JG. Dramatic decline in the HIV-1 RNA level over calendar time in a large urban HIV practice. Clin Infect Dis 2011;53(6):600-604.
  • Mugavero MJ, Lin HY, Willig JH, et al. Missed visits and mortality among patients establishing initial outpatient HIV treatment. Clin Infect Dis 2009;48(2):248-256.
  • Mugavero MJ, Amico KR, Westfall, AO, et al. Early retention in HIV care and viral load suppression: implications for a test and treat approach to HIV prevention. J Acquir Immune Defic Syndr 2012;59(1):86-93.
  • Mugavero MJ, Napravnik S, Cole SR, et al. Viremia copy-years predicts mortality among treatment-naive HIV-infected patients initiating antiretroviral therapy. Clin Infect Dis 2011;53(9):927-935.
  • Tripathi A, Youmans E, Gibson JJ, et al. The impact of retention in early HIV medical care on viro-immunological parameters and survival: A statewide study. AIDS Res Hum Retroviruses 2011;27(7):751-758.

Measurement

  • Dombrowski JC, Kent JB, Buskin SE, et al. Population-based metrics for the timing of HIV diagnosis, engagement in HIV care, and virologic suppression. AIDS 2012;26(1):77-86.
  • Mugavero MJ, Davila JA, Nevin CR, et al. From access to engagement: measuring retention in outpatient HIV clinical care. AIDS Patient Care STDS 2010;24(10):607-613. Interventions
  • Aziz M, Smith KY. Challenges and successes in linking HIV-infected women to care in the United States. Clin Infect Dis 2011;52(suppl 2):S231-S237.
  • Cabral HJ, Tobias C, Rajabiun S, et al. Outreach program contacts: do they increase the likelihood of engagement and retention in HIV primary care for hard-to-reach patients? AIDS Patient Care STDS 2007;21(suppl 1):S59–S67.
  • Bradford J, Coleman S, Cunningham W. HIV system navigation: an emerging model to improve HIV care access. AIDS Patient Care STDS 2007;21(suppl 1):S49-S58.
  • Zaller ND, Fu JJ, Nunn A, et al. Linkage to care for HIV-infected heterosexual men in the United States. Clin Infect Dis 2011;52 (suppl 2):S223-S230.