Focus groups show patients who have sickle cell disease (SCD) like the idea of a digital health app for cognitive behavioral therapy (CBT) that allows them to make meaningful connections with people with shared experiences.
People with sickle cell disease (SCD) are open to using digital health applications to receive mental health care, but they favor software that enables them to connect with patients and personalize their experiences, according to a new study published in JMIR Mental Health.
The findings were based on focus groups of African American patients with SCD and could be used to help better design cognitive behavioral therapy (CBT) apps for patients.
Study authors said about 100,000 people in the United States have SCD and most are of African descent. Depression and other mental health disorders are common among people with SCD, affecting nearly 4 in 10 patients. However, many patients never receive treatment for their mental health disorders. That lack of treatment has also been linked with worsening disease symptoms.
“Depression and anxiety disorders not only lead to poorer quality of life, but in patients with SCD, depression is associated with increased pain frequency and duration, pain-related hospitalizations, opioid dependence, medical costs, and risk of mortality,” the authors wrote.
CBT is one effective form of therapy for people with SCD and mental health comorbidities, but access to the therapy can be limited in certain areas. Digital CBT—therapy delivered using mobile devices—may be able to close that gap. However, it will only serve that purpose if it is used, the authors noted.
“The main limitation of digital CBT in SCD care is that uptake and engagement are often poor among minority race and ethnic groups, and even when made available, patients with SCD may not use digital CBT,” they wrote.
The authors divided the 25 participants into 5 focus groups, each introduced to a CBT-based digital health app, and then asked questions about the appeal of the program, its usability, and factors that might make them more or less likely to use it.
After reviewing the focus group discussions, the authors said 5 themes emerged. Patients were particularly interested in an app that would help them connect with other people with SCD and in software that would allow for personalization of content and coaching features. Participants had varying opinions about the characteristics of coaches. Some wanted coaches with formal mental health training, while others preferred coaching from people with similar lived experiences. They also said they would find it useful if the app had features that would allow them to track their pain and symptoms and remind them to take medications.
When asked about how often they anticipated interacting with an app, their responses ranged from once or twice per week to not at all. Some participants said they would use the app for short periods when it was most needed; others said they would consider using the app for longer.
The investigators said the focus groups showed that patients are unlikely to initiate and sustain engagement with a digital CBT app if they find it irrelevant, unrelatable, or culturally insensitive. However, they said researchers who heed the concerns of patients could find better results.
“Personalizing the content delivered and coaching as much as possible, creating a desirable space for social connection between patients, and creating and delivering content that is relevant to patients with SCD while also acknowledging other contributors to mental health are all characteristics that will increase the successful implementation of digital CBT in routine SCD care,” they concluded.
Nikolajski C, O'Brien J, Nardo E, Szigethy E, Jonassaint C. Tailoring a digital mental health program for patients with sickle cell disease: qualitative study. JMIR Ment Health. Published online April 6, 2023. doi:10.2196/44216
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