Toward a Conversational Agent to Support the Self-Management of Adults and Young Adults With Sickle Cell Disease: Usability and Usefulness Study

Abstract

Sickle cell disease (SCD) is the most common genetic blood disorder in the world and affects millions of people. With aging, patients encounter an increasing number of comorbidities that can be acute, chronic, and potentially lethal (e.g., pain, multiple organ damages, lung disease). Comprehensive and preventive care for adults with SCD faces disparities (e.g., shortage of well-trained providers). Consequently, many patients do not receive adequate treatment, as outlined by evidence-based guidelines, and suffer from mistrust, stigmatization or neglect. Thus, adult patients often avoid necessary care, seek treatment only as a last resort, and rely on self-management to maintain control over the course of the disease. Hopefully, self-management positively impacts health outcomes. However, few patients possess the required skills (e.g., disease-specific knowledge, self-efficacy), and many lack motivation for effective self-care. Health coaching has emerged as a new approach to enhance patients' self-management and support health behavior changes. Recent studies have demonstrated that conversational agents (chatbots) could effectively support chronic patients' self-management needs, improve self-efficacy, encourage behavior changes, and reduce disease-severity. To date, the use of chatbots to support SCD self-management remains largely under-researched. Consequently, we developed a high-fidelity prototype of a fully automated health coaching chatbot, following patient-important requirements and preferences collected during our previous work. We recruited a small convenience sample of adults with SCD to examine the usability and perceived usefulness of the system. Participants completed a post-test survey using the System Usability Scale and the Usefulness Scale for Patient Information Material questionnaire. Thirty-three patients participated. The majority (64%) was affected by the most clinically severe SCD genotypes (Hb SS, HbSβ0). Most participants (94%) rated the chatbots as easy and fun to use, while 88% perceived it as useful support for patient empowerment. In the qualitative phase, 72% of participants expressed their enthusiasm using the chatbot, and 82% emphasized its ability to improve their knowledge about self-management. 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. Further work is needed to refine the system, and to assess clinical validity.

How Far Can Conversational Agents Contribute to IBD Patient Health Care—A Review of the Literature

“…The application of two filters resulted as follows: first, 22 articles were published in 2020; second, and after selecting health topic as a domain area, 11 articles emerged as a final result. In the end, this material was spread across these different Frontier Journals categories: digital health ( N = 7) ( 20 – 26 ); public health ( N = 2) ( 27 , 28 ); and psychiatry ( N = 2) ( 29 , 30 ). All 11 titles were analyzed through a double review discussion.…”

“…Issom et al ( 20 )—This study met the inclusion criteria of “articles related to any chronic disease” defined in the second search phase.…”

“…Sickle cell disease ( 20 ) article reveals contributions to IBD study. Chatbot technology for chronic disease self-management can have high acceptance rates and usability scores.…”

Users’ needs for a digital smoking cessation application and how to address them: A mixed-methods study

“…Several of these factors have also been found to play a role in previous work. Issom et al (2021) , for instance, saw that the empathy expressed by a conversational agent was particularly appreciated, and de Graaf, Allouch & Van Dijk (2015) observed that the expression of human-like emotions by a social robot was perceived as important. Expressing empathy has also been shown to help a virtual agent to form and maintain a relationship with a user ( Bickmore et al, 2005 ), which can support behavior change ( Zhang et al, 2020 ).…”

“…Expressing empathy has also been shown to help a virtual agent to form and maintain a relationship with a user ( Bickmore et al, 2005 ), which can support behavior change ( Zhang et al, 2020 ). In addition, Issom et al (2021) observed that the anonymous nature of conversing with a conversational agent was valued. Regarding situational awareness, both de Graaf, Allouch & Van Dijk (2015) and Issom et al (2021) obtained similar findings in that participants preferred the social robot to understand more than just pre-programmed commands and that users of conversational agents requested more flexible answer choices.…”