Community Health Workers Provide a Safety Net for Patients with Sickle Cell Disease

Posted September 15, 2016 by Sonya Spillmann, RN

Blood Transfusion
A new clinic in California will fill a key gap in care for adults with SCD.

Increasing the number of patients with sickle cell disease (SCD) who receive regular care from knowledgeable providers is one of the three main goals of the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), for which NICHQ is the national coordinating center. But what happens to patients with SCD who have trouble initiating or remaining in treatment? Through the SCDTDP, community health workers (CHWs) are a critical layer of support for these at-risk patients. 

Patients attend clinic based on their highly individualized needs. A patient with well-managed SCD may come to clinic once a month, every few months or as frequently as every week. Missing therapeutic treatments offered at the clinic, such as blood transfusions, can lead to a crisis of pain or an exacerbation of a patient’s other medical conditions.

“My main job is to get patients into care or to remain in care consistently,” says Letta Grant, CHW for the Sickle Cell Infusion Center (SCIC) at Johns Hopkins Hospital. She and her colleague, Nikia Vaughan, serve as liaisons between the clinical staff and patients. “Patients are seen as often as necessary to get them to a good place with their health,” says Grant. 

Patients who have specific needs identified during treatment or miss multiple clinic appointments and are frequently admitted to the emergency room – a sign that SCD is not being managed well – are referred to a CHW by clinical providers. 

“We want to weave our patients away from the emergency room and towards the clinic – so they can have consistent care in an outpatient setting.” While emergency care relieves acute symptoms of SCD, the providers at the SCIC want to partner with the patient for the long-term in managing the disease, to reduce the number of pain crises and improve their overall quality of life. 

As a team, the CHWs follow approximately 40 of the SCIC’s nearly 600 patients from referrals. “This population is very underserved,” says Vaughan. “CHWs are essential to get out into the community as people who understand the disease and want to help clients with what is taking place in whole of their lives.” With access to history, medical records and appointment schedules, the CHWs identify and address patient-specific barriers to care. 

Barriers to Care
Grant’s experience, “other life situations” account for why patients need additional support despite the availability of knowledgeable providers. Because the clinic serves adults with SCD, the CHWs also assist patients who need support transitioning from pediatric into adult care. 

“Often, patients don’t know what resources are available, or even how to start the process of applying for them,” says Grant. 

Many patients are on fixed incomes, due to their health status, which can make anything from paying bills, having a consistent place to live or paying a babysitter a significant barrier to prioritizing scheduled appointments. The CHWs at the SCIC will help patients fill out insurance forms, explore housing options, apply for public transportation passes or research payment options for their utilities. After a resource is identified, Grants says, “I like to ask, ‘Do you need me to come with you?’” and considers it one aspect of her job to accompany a patient who needs this additional support. 

“After identifying needs and giving our clients resources, I like to put the ball in their court,” states Vaughan. “We are here to offer support as they learn to self-advocate.” 
 
Keeping Patients in Care
Grant likes to introduce herself in person to the patients, to put a face to the name, which she’s found makes a big difference for follow-up over the phone, through the mail, or when they meet again in person. Both she and Vaughan make home visits to remind patients about their clinic appointments, even when a patient does not have a consistent place to live. During these visits, they encourage patient’s friends or family members to be supportive and involved in maintaining the patient’s health.

Two other strategies Grant employs to keep patients in care, which are working better than she expected, are advising patients to schedule their next treatment before they leave the clinic or hospital setting and handing the patient a written appointment list.

“Many of our patients see multiple providers for their complex health issues. With all they have going on, the appointment list helps them know where they need to be and when. It helps them keep track of everything in one place,” says Grant.

As a team, the CHWs at the SCIC are committed to supporting their patients and routinely follow up on their progress with barrier issues. “I contact my clients once a week,” Vaughan says. “We want them to understand their disease and the medical necessity of maintaining care, because until there is a universal cure, being in care will lead to better outcomes.”

“Some patients need very little support to get started,” explains Grant, “others need more. It’s our job to figure that out and get them to clinic. Ultimately, our goal is for them not to need us.”

Until then, CHWs will be the safety net for those who do.

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