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Tackling the pain of sickle cell disease

The pain associated with sickle cell disease has been described as: “Feeling as if your bones are breaking, your blood is ‘stuck’ and a rusty blade is sawing your insides.” 

This inherited blood disorder sees normally round red blood cells becoming crescent-shaped and blocking small blood vessels. The result is that less blood flows to tissues and organs, causing severe pain that can lead to permanent damage, increased infection and possible organ failure. 

In 2015, our teams at Johns Hopkins Aramco Healthcare (JHAH) were seeing up to 150 sickle cell cases each month, often in Emergency Medical Services (EMS). These high volumes stem from a strong prevalence of the genetic trait for sickle cell disease found in the Eastern Province of Saudi Arabia. 

Help for those in pain

Nearly two-thirds of adults with sickle cell disease will experience pain every day, and the volume and complexity of their cases strained the busy EMS at our Dhahran Health Center.

This led to us working with Johns Hopkins Medicine to open an infusion clinic in April 2017, using Johns Hopkins’ Sickle Cell Center as a model. The clinic not only treats patients with acute pain, it also provides routine outpatient care, including chronic pain management and social work support. 

Today, we provide centralized sickle cell care, performed by clinicians who deeply understand both the disease and our patients’ unique needs. This significantly enhances continuity of care by improving the clinical team’s ability to develop customized treatment plans. 

“No one protocol will fit all patients. We work with each patient to create a treatment plan to manage everyday pain, as well as crises,” says Zainab Mahr, coordinator of our Sickle Cell Program.

Clinic reduces emergency admissions

Between 2015 and 2017, both JHAH EMS visits and hospital admissions dropped massively. We directed the majority of patients to the new infusion clinic, where visits lasted less than 12 hours – compared with an average five-day hospital stay in 2015 – and where the average time to receive pain medication decreased by nearly half.

“We have begun to see significant improvement in pain management practices, lower rates of readmission, reduced EMS visits and substantially increased patient satisfaction,” says Kawthar Al Hussain, clinical nurse specialist for pain management at JHAH.

“We are seeing this success because we are implementing patient-specific treatment plans, standardizing and improving the care we provide, and working at the patient level to decrease the need for acute care.” 

Our Sickle Cell Program is transforming the lives of our patients. It may also serve as a model in the Eastern Province, where as many as one in five hospital admissions relates to sickle cell disease.

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