Mobile app designed to improve adherence to sickle cell disease treatment

The NIH awarded a 6-year, $4.4 million grant to St. Jude Children’s Research Hospital to develop a mobile app that can improve treatment access and adherence among patients with sickle cell disease.

“While we have made good progress using hydroxyurea to help children and younger adults look after their disease, much remains to be done to slow the progress of sickle cell disease as older teenagers transition to adult life,” Jane Hankins, MD, associate member of the St. Jude department of hematology and principal investigator of the project, said in a press release. “Our goal with this project is to use a mobile health application to help those aged 15 years and older ... manage sickle cell disease. This is crucial time in their lives when they often have less access to health care providers and comprehensive sickle cell programs, which greatly impacts their quality of life.”

Jane Hankins

HemOnc Today spoke with Hankins about how a mobile app could improve hydroxyurea treatment adherence in this patient population.

Question: What is hydroxyurea adherence like now?

Answer: In short, it is not good. National surveys show that approximately 50% or less of young adults are prescribed hydroxyurea, but less than one-third of these patients are taking it as prescribed. Adherence is also very low among adults with sickle cell disease.

Q: What are some of the reasons for nonadherence?

A: There are several reasons. Nonadherence is multifactorial. Hydroxyurea must be taken daily, and it is hard for patients adhere to a medication that must be taken every day, with no end date. As with treatments for any chronic disease, at some point we expect patients to be less motivated to take the medication every day. They go through a phase of excitement in the beginning and then it wears off, and it is simply hard to keep enthusiasm with daily treatment. Second, it is hard to remember to take a medication every day, unless a routine is created. Third, the maturity of the patient plays a role. If the patient is very young and does not understand the importance of the medication or is upset about their diagnosis — or their daily medication — then, until the patient reaches a level of maturity to help them understand that the medication can help them be more similar to their peers, adherence is affected.

Q: How might this research effort help increase adherence in the target population?

A: This research effort takes advantage of the fact that young adults are very engaged in the use of their cell phones. The idea is that, if there is one thing that they are interested in, why not take advantage of that one thing and use it to improve their health? We conducted a local study in adolescents who had been on the medication for years and adherence was not good. We sent text messages to their cell phones to remind them to take their medication, and this had a very positive effect. All patients improved their adherence. This gave us the idea to build on the text-message experience by doing more than just sending reminders, and instead doing something that patients actually could interact with. This was the idea behind developing the app, which will be designed by the patients, as well. We hope that the app ultimately will do several different things: remind patients to take their medication, allow them to access information about the disease and treatment in general, and be able to communicate with other patients. At this point, we do not know exactly what the app will offer, because we are relying on our patients to tell us what they want it to include.

Q: How did St. Jude get involved in the project?

A: We have a very large pediatric population with sickle cell disease at St. Jude and in Memphis, specifically, as it has many people with sickle cell disease. We were in the right place to study this population. We ran the pilot study with text messaging in our adolescent population and they loved it. We were already involved in this and decided we would take it to the next level.

Q: When will the initiative begin and how long will it run?

A: We began seeking information from patients. This will take about a year. We will collect all information and then sit down with the app developers. It will be at least a year-and-a-half before we start testing the app. We will test it for about a year, look at the results, and take it to a larger group of patients in other cities and states. The grant is a 6-year grant, so we hope to complete everything in 6 years.

Q: Is there anything else that you would like to mention ?

A: I am excited that we are doing this in partnership with the patients who are the end-users of the product that we will generate. If they like it and the results are promising, I would expect the adoption rate to be high in other populations of adolescents with sickle cell disease. If a lot of them like it, they will tell their friends about it and more people will use it, which ultimately will impact their health and the medical system. Also, satisfaction from the medical team might increase. If the patients take their medication as directed, it will also make the doctor happy. – by Jennifer Southall

For more information:

Jane Hankins, MD, can be reached at St. Jude Children’s Research Hospital, 262 Danny Thomas Place, Memphis, TN 38105; email: jane.hankins@stjude.org.

Disclosure: Hankins reports no relevant financial disclosures.