Living with sickle-cell anemia (SCA) is tough. Those who have it often endure intense pain, swollen hands and feet, multiple infections, altered growth patterns and even problems with eyesight. Treating it often means numerous hospital visits and multiple medications for a score of symptoms all of which the patient has to record to stay on top of his or her condition. But written notes — hastily scribbled and easily lost — can be unreliable and this can put the patient at risk. Now a mobile app, designed by researchers at Imperial College London (ICL), can help sickle-cell anemia patients keep a record of their condition a lot more simply and efficiently.
As reported by Dalmeet Chawla at ICL, the free app — called SiKL — allows the patient to maintain an ongoing record of his or her condition. Sufferers can record their appointments and checkups, as well as when and for how long they experience bouts of pain (known as "crises") for which they may receive treatment at home or in hospital.
They can also keep track of the multiple medications that must be taken at different points throughout the day, any antibiotics needed to combat infection, their level of hydration, the blood tests and transfusions that help fight the symptoms of SCA, as well as factor in things like exposure to excessive heat and cold that can adversely affect them.
The app was developed at ICL by Dr. Kit Huckvale, whose doctoral research set out to "consider the scope for smartphone and other handheld device software (apps) in supporting the care of long-term conditions." As we reported last year, the scope for medical diagnosis and treatment via cell phones is of increasing interest to scientists.
Sickle-cell anemia is a disease of the blood. The majority of blood is made up of red blood cells (also known as erythrocytes) that contain the hemoglobin that transports oxygen around the body.
These cells tend to live around 120 days before the body replaces them. In healthy blood, the cells are round — almost donut-shaped — and are flexible enough to pass easily through the body's arteries, veins and capillaries. Sickle-cell anemia produces red blood cells that contain "hemoglobin S." This makes them stiff and sticky and creates crescent moon-shaped cells that cause blockages.
For the patient, it is these obstructions that can mean pain, infection and organ damage. In addition, the red blood cells of an SCA patient last less than three weeks, meaning the body struggles to replace them with new cells.
Though the disease is widespread, it mainly affects people of African, Middle Eastern or eastern Mediterranean descent. According to the Sickle Cell Disease Association of America (SCDAA), more than 70,000 people in the U.S. have SCA and another 1000 are born every year. This, though, is just the number who have the disease — the National Heart, Lung and Blood Institute (NHLBI), puts the number of genetic carriers of the illness — those with the potential to pass it on to their children have "sickle cell trait" — at around 2 million.
Dr. Huckvale suggests that the app could help in developing countries, where sickle-cell anemia is more common and where rigorous record keeping is therefore of utmost importance. “The app is available globally right now, so anyone who has an interest could pick it up and use it,” he says.
"The disease is less common in developed countries," says Chawla, which means those in the healthcare professions can be less aware of it. Organizations like the SCDAA and the NHBLI attempt to redress this problem through public education and advocacy. The SCDAA says it continues to work with "congressional champions to authorize and fund a number of national SCD legislative programs. These programs provide support for patients suffering from SCD, while encouraging enhanced research intended to identify next-generation treatments and a cure for SCD." National Sickle Cell Advocacy Day is being held on April 15 and 16. This year’s Sickle Cell Awareness Day, meanwhile, is on June 19.
The Mayo Clinic advises that, although people who develop the condition are usually diagnosed in early childhood, those with any family history of SCA and those in the groups at risk should keep an eye out for symptoms. It is important that they see a doctor right away if they notice unexplained episodes of severe pain, swelling in the hands, feet or abdomen, fever, pale skin or nail beds, yellow tint to the skin or whites of the eyes or any signs or symptoms of stroke.
Huckvale suggests that even though the prospects for sharing information are huge, the app is quite safe in terms of privacy. “At the moment, everything that you put on the app stays on that person’s device and we were very clear from the start that although there might be uses in having the data connected and synced to the cloud, it opened up some risks that we didn’t feel comfortable about.”
Huckvale and the team of researchers and clinicians he worked with at ICL have great hopes for the app. Though doctors are indispensible, for people who suffer from chronic conditions like SCA, self regulation and treatment is still vitally important if they are to live lives as close as possible to "normal." The convenient nature of cell phones clearly still has enormous potential to further aid and assist those in the greatest need. From the reviews it's getting in the store, the app is clearly doing its job.