According to the results of a study published in Frontiers in Digital Health, a conversational agent (chatbot) designed to support sickle cell disease (SCD) self-management was scored as high usability and usefulness by a group of adults and young adults with SCD.

“Because they often are prone to stigma, neglect or under-treatment, patients [with SCD] often avoid emergency departments and seek treatment only as a last resort, which negatively impacts long-term health outcomes and may lead to early mortality,” the authors wrote. “Scalable and low-cost mobile health (mHealth) interventions could offer a potential route to support the self-management needs of this population.”

The investigators developed a high-fidelity prototype of a fully automated mHealth coaching app/chatbot called TREVOR (“the sickle cell robot coach”) for patients with SCD using patient-important requirements and preferences.

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According to the publication, TREVOR can deliver text-based messages and media objects, such as videos and podcasts, to patients and has 3 objectives:

  • To educate patients with evidence-based knowledge on SCD self-management;
  • To inform patients on self-care practices that other patients have ranked as effective in reducing the incidence of vaso-occlusive pain crises; and
  • To connect patients with each other for community peer support.

The researchers recruited a convenience sample of 33 adults with SCD to evaluate the usability and perceived usefulness of the app. After testing the app for approximately 45 minutes, participants completed a post-test survey that used the System Usability Scale and the Usefulness Scale for Patient Information Material questionnaire.

Among the participants, 66% were female and 64% were affected by the most severe SCD genotypes (Hb SS, HbSβ0). Participants’ median age was 38 years (range, 19-59), and most participants (70%) were considered active (either studying or employed).

After testing, 94% of participants rated the chatbot as easy and fun to use, and 88% perceived it as useful to support patient empowerment. When reporting their experiences with the app, 72% of participants expressed enthusiasm for using the chatbot, and 82% of participants felt it was able to improve their knowledge about self-management.

Limitations of the study included the small sample size and lack of diversity among the participants, the use of nonprobability sampling methods and potential selection bias, and the short duration of app testing.

Based on the results of the study, the researchers presented 8 recommendations for the future developments of chatbots, such as tailoring health information to the skills of patients, encouraging participatory research and codesign, disseminating chatbots on as many messaging platforms as possible, and incorporating empathetic small-talk and psychosocial support capabilities.

“Self-management of people with SCD is a never-ending task. It is therefore important to seek to develop systems that can fit into patients’ daily life with the least disturbances possible,” the authors wrote. “[Our] findings suggest that chatbots could be used to promote the acquisition of recommended health behaviors and self-care practices related to the prevention of the main symptoms of SCD.”

Additional studies are needed to refine the system and to assess its clinical validity.


Issom DZ, Hardy-Dessources MD, Romana M, Hartvigsen G, Lovis C. Toward a conversational agent to support the self-management of adults and young adults with sickle cell disease: usability and usefulness study. Published online January 29, 2021. Front Digit Health. 2021;3:600333.