How important is linkage and retention to primary medical care? What are the barriers that might prevent people to be linked and retained in care?
There are many barriers, and the solutions to these have to be numerous as well.
Barriers to care and retention have been identified as transportation problems, mental health issues, chemical dependency, homelessness, stigma, and lack of insurance, as well as many more. According to the CDC, “Improving the health of persons with HIV and reducing the number of new infections in the United States will depend on increasing access to HIV medical care and eliminating disparities in the quality of care received.”
Offering services to help promote linkage and retention in care necessitates the partnerships of the entire care team. This includes medical providers, medical case managers, nursing, mental health, peer educators, benefits counselors, patient navigators, and others. Ideally, all new patients should receive appointments between one and two weeks after diagnosis in order to benefit from effective antiretroviral therapy (ART). Poor health outcomes for clients in our clinic are most often associated with late engagement into care as well as sporadic attendance at clinic appointments; in other words, those who are not rapidly engaged in care or who fall out of care after the first few months.
Helping patients
How can we as clinicians help our patients? At the CORE Center in Chicago our Ryan White Part A Early Intervention Services (EIS) Patient Navigators work diligently to link new patients into care, and conduct outreach for the purpose of re-engaging those individuals who have fallen out of care. We have helped patients navigate their system of care, while working very closely with the team. We have identified those barriers that could prevent patients from adhering to their clinic appointments. To date, problems with transportation remain the number one cause that prevents patients from coming to their appointments. Luckily, we are able to circumvent this as a barrier by providing transportation when needed.
How useful are well-being checks? What we found over the years was that our patients greatly appreciated having someone calling for the first few weeks to make sure that they were okay. How could well-being checks relate to overall better health outcomes? This little piece of care can sometimes be forgotten during the course of one’s busy day. Our Linkage and Retention program recognized that well-being checks help to foster health and emotional well-being. It was equally as important as the need to educate or provide health literacy.
We’ve incorporated this approach as part of our daily routine, because we feel that overall it can increase appointment adherence and decrease the risk for noncompliance, and most importantly, helps with communication and promotes trust between the navigators and the patients.
Our Linkage and Retention program has had many successes with patients who are newly diagnosed and linked into care, reengaged, retained, or lost to care. The following patients are just two that we continue to monitor and support through the continuum of care.
A 52-year-old African American male came to us in the fall of 2015 with multiple co-morbidities such as diabetes, blindness, hypertension, and a history of strokes. Due to his blindness, transportation was a huge barrier, as he couldn’t rely on the services of others all the time. Our patient navigator provided cabs to and from his home for the appointments. A family member met him at home after he was seen. Over the course of time, the navigator was able to establish a relationship with the patient, and met him at the door each time he had a scheduled appointment. Follow-up well-being calls were made weekly for the first month. The navigator and the patient have now established a professional friendship which both hope will continue. Because of the face-to-face meetings and numerous well-being phone calls, the patient has been adherent to both clinical appointments and appointments to specialty clinics. To date, the patient remains undetectable (viral load less than 40 copies/mL), and his CD4 count remains over 1,000. His insurance is stable, he has a case manager in place, and now has a family member who brings him to the clinic. Whenever he is at the clinic, he asks to see his “special person,” his navigator.
A 43-year-old Hispanic male met one of our navigators in the fall of 2015. This patient was an “old/new” who had returned after falling out of care for some time. When the navigator met him he was in a wheelchair due to the increased swelling of his lower extremities. He was diagnosed with Kaposi sarcoma (KS), unable to walk, drank a lot of alcohol, lived in a basement apartment, and basically had no help from family or friends. Our team quickly surrounded him, as he had some suicidal ideations. Our navigator immediately helped him through the system of care, which included his adherence to all appointments (including chemotherapy) and specialty clinics. Transportation was an issue because the patient could not walk. We provided him with cabs to his appointments, and an arrangement was made to have a friend help him in and out of the cab. There was a long and slow process to help him reverse the swelling in his legs and understand the need for medication adherence, along with addressing other issues. To date, the patient is in remission, he is able to walk to the bus to get to the clinic, has a part-time job, and has been attending his AA meetings. Our patient has been adherent to all clinical appointments thus far. His viral load is undetectable (less than 40 copies/mL) and his CD4 count is stable at 325. The patient has expressed his deep gratitude for the continued well-being checks and his navigator’s involvement in his care.
These are just two of our success stories at the CORE Center. I can’t stress enough the importance of navigators in the role of linkage and retention. As a medical team, we all must help support long-term retention across the continuum of care. If we hope to see a cure of HIV one day, we must all play a vital role in linkage and retention.
Kathleen Jacobs-McLoyd, RN, BSN, is presently working as the Linkage and Retention Project Coordinator at the Ruth M. Rothstein CORE Center in Chicago. Her past nursing experience includes 21 years at Children’s Memorial Hospital working in the Pediatric Hematology/Oncology department. Kathleen wanted to expand her nursing career interest and decided to leave Children’s and work primarily in the field of HIV/AIDS. She was hired at the RMR CORE Center in 2000 and began her journey in this specialty to her current position. She has worked in the community, given presentations, and worked on research demonstration projects. She is passionate about the work that she is doing both as a nurse and as a project coordinator.