March 08, 2016 — Blog Post
Improving patient engagement for adult sickle cell populations
While adult patients suffering with sickle cell disease are likely a very minute portion of your patient population, ineffective support of these patients can be costly to your organization and exacerbate the silent suffering many of them endure.
Breaking down the costs of sickle cell disease
In 2009, one study revealed the annual cost of medical care for people suffering from sickle cell disease was more than $1.1 billion. Adolescent sickle cell patients receive a great deal of support when diagnosed, and the study revealed they are the least costly to hospitals and health systems.
However, adult sickle cell patients often do not receive the same level of support for their chronic pain. Some patients are lucky to find the support of specialists but, for many, they do not receive the substantial amount of support required to manage their pain effectively. This leads to patients experiencing frequent sickle cell crises and hospitals experiencing an increased number of emergency department visits, resulting in per patient-month costs up to $2,853.
Additionally, during ED visits, many sickle cell patients have to address skepticism when they require increased amounts of pain medication. For many, their bodies have simply built up tolerance. These interactions leave patients feeling defensive and frustrated and result in avoiding help, even when necessary, which can exacerbate problems and lead to even more costly emergency care.
Where engagement comes in
Without comprehensive engagement in their health and improved understanding of their disease, many adult sickle cell patients are ineffective in managing their constant pain. They do not feel empowered with a variety of options they can use when pain occurs, they are not sufficiently knowledgeable about what can trigger their pain, and they are unsure of where to go to seek help and when – increasing frustration, increasing the number of crises they experience, and increasing the number of emergency department visits they require.
How organizations can improve engagement
Healthcare organizations can improve their engagement with adult sickle cell patients in a variety of ways. For example:
- Sickle cell patients need regular and consistent support. How frequently do your providers see their sickle cell patients? Make sure there is a regular visit plan in place.
- Emphasize the need for providers to create workflows that include making pain management plans with sickle cell patients. They should walk patients through the plan and provide them with a copy they can take to emergency visits when necessary.
- Third, educate providers about the benefits of hydroxyurea for treatment. Research has found that hydroxyurea can help stop some problems before they start for sickle cell patients – reducing the number of pain crises, necessary blood transfusions and hospital stays. In fact, one study showed treatment with hydroxyurea can lower costs up $3,000 per patient.
- Lastly, engage patients in their disease management when they are outside of your care facility. Provide resources, multimedia and telephonic, that reach patients and their families to inform them about their disease and what they can do to manage it more effectively. These tools help empower patients with the ability to manage their health at home, to know how to work with emergency department teams when necessary, how to avoid addiction, and how to take control of a disease that typically feels debilitating.
Bottom Line: Adult sickle cell patients need to be more effectively engaged in their care so they can better manage their pain and understand how to use the right resources at the right time – this will improve attitudes, improve outcomes and improves costs.