An mHealth Self-management System for Support Children With Acute Lymphocytic Leukemia and Their Caregivers: Qualitative Co-design Study (Preprint)

Abstract

BACKGROUND The unique features of smartphones have extended their use in different fields, especially in the health care domain. These features offer new opportunities to support patients with chronic conditions by providing them with information, education, and self-management skills. We developed a digital self-management system to support children with cancer and their caregivers in Iran (low- and middle-income country). OBJECTIVE This study is aimed at the development and preliminary evaluation of a cancer self-management system (CanSelfMan) tailored to the needs of children with cancer and their parents or caregivers. METHODS This study was conducted in collaboration with a multidisciplinary team between January and February 2020 at MAHAK’s Pediatric Cancer Treatment and Research Center. We developed a self-management system in six stages: requirement analysis, conformity assessment, preparation of educational content, app prototyping, preliminary evaluation, and developing the final version. RESULTS A total of 35 people (n=24, 69% parents and n=11, 31% children) volunteered to participate in the study. However, only 63% (15/24) of parents and 73% (8/11) of children were eligible to participate. By adopting a user-centered design approach, we developed a mobile app, CanSelfMan, that includes five main modules (knowledge base, self-management tips, self-assessment report, ask a question, and reminders) that provide access to reliable information about acute lymphocytic leukemia and the self-management skills required for side effect measurement and reporting. A web-based dashboard was also developed for oncologists and included a dashboard to monitor users’ symptoms and answer their questions. CONCLUSIONS The CanSelfMan app can support these groups by providing access to reliable information about cancer, facilitating communication between children or parents and health care providers, and helping promote medication adherence through a reminder function. The active participation of the target group can help identify their needs. Therefore, through the involvement of stakeholders such as patients, caregivers, and oncologists in the design process, we improved usability and ensured that the final product was useful. This app is now ready to proceed with feasibility studies.

Design strategies for the development of mHealth services in healthcare of adolescents with cancer

“…Effective communication between doctors, patients and parents serves a significant role as it seems to enhance patients' sense of satisfaction and treatment compliance thus improving its outcome (10). As a matter of fact, the same researchers reported that the main factor for noncompliance with treatment in young patients is poor communication between doctors, patients and parents (10).…”

“…Effective communication between doctors, patients and parents serves a significant role as it seems to enhance patients' sense of satisfaction and treatment compliance thus improving its outcome (10). As a matter of fact, the same researchers reported that the main factor for noncompliance with treatment in young patients is poor communication between doctors, patients and parents (10). Therefore, it becomes crucial to create new, alternative methods of communication, with the aim of providing patients both support and counseling for the management of distressing symptoms (10).…”

“…As a matter of fact, the same researchers reported that the main factor for noncompliance with treatment in young patients is poor communication between doctors, patients and parents (10). Therefore, it becomes crucial to create new, alternative methods of communication, with the aim of providing patients both support and counseling for the management of distressing symptoms (10).…”

“…Current practices in symptom assessment required patients' accurate recall after one to six weeks during medical visits (15). Furthermore, in most cases, the frequency and severity of symptoms appear to be underestimated, resulting in discrepancies between self-reports and medical records (10). Correspondingly, a broad percentage of patients' symptoms and difficulties remain unspecified provoking difficulties in treatment (10).…”

“…Furthermore, in most cases, the frequency and severity of symptoms appear to be underestimated, resulting in discrepancies between self-reports and medical records (10). Correspondingly, a broad percentage of patients' symptoms and difficulties remain unspecified provoking difficulties in treatment (10). Finally, poor symptom management has been shown to be associated with the onset of Post-Traumatic Stress Disorder and other psychological problems (13).…”