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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).
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.
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.
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.
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.
More than 90% of children worldwide live in low- and middle-income countries (LMICs) where accessing high-quality health care is difficult or expensive [
Approximately 80% of all the cases of leukemia in children are of the acute lymphoblastic type [
The results of studies specifically examining the role of educational interventions among children with acute lymphocytic leukemia (ALL) and their parents indicated that information provision and increasing parents’ knowledge about the disease greatly supported the family, enhanced parents’ ability to take care of their children, and considerably improved the family’s quality of life [
One such method is self-management, which is currently one of the best methods for cancer management [
This feature is made possible using information and communication technology tools such as smartphones [
Although the successful implementation of self-management programs requires the participation of all 3 groups, the results of a scoping review conducted in the requirement analysis stage revealed that numerous studies have been conducted in different countries, which developed mHealth interventions to support children with cancer and their families [
For instance, Wang et al [
There is no comprehensive solution that can garner the cooperation and participation of all three groups (children, parents, and oncologists) and address their different needs. Therefore, in line with the World Health Organization’s strategy in terms of performing interventions to increase the survival rate of children with cancer in LMICs by 2030 [
This study was conducted between January and February 2020 at MAHAK’s Pediatric Cancer Treatment and Research Center. MAHAK is a highly specialized pediatric cancer hospital in Iran. This center has 100 hospital beds and covers >25,000 children with cancer from all over the country (Iran) and neighborhood countries. According to the latest official reports, >6000 children with cancer receive chemotherapy at this center annually [
All participants were recruited from MAHAK’s Pediatric Cancer Treatment and Research Center in the north of Tehran (Iran). We used a banner that provided information about the study (in the MAHAK outpatient chemotherapy clinic) to recruit interested individuals in this study. A total of 35 individuals (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. The inclusion criteria for children were having ALL, being diagnosed, being aged at least 7 years old (able to express the disease and the associated problems), and being under treatment for more than a year. The inclusion criteria for the parents were being literate in Persian and having at least one child with a diagnosis of ALL who was receiving treatment for 1 year. These purposive samples of children with ALL and their parents allowed for the aggregation of data related to the development and primary evaluation of this study. Health care providers (oncologists) were also recruited from this center. The inclusion criterion for this group was having at least 10 years of clinical experience in the oncology department. Children were excluded if they were illiterate, were patients with end-stage cancer, experienced mental health problems, and were unable to use a smartphone. Parents were excluded if they did not have the ability to work with a smartphone, did not have reading and writing literacy, or were unwilling to provide informed consent.
This research received ethical review approval from Shahid Beheshti University of Medical Sciences (IR.SBMU.RETECH.REC.1396.1316). All focus group (FG) meetings took place at the MAHAK hospital and were led by a team member (AM) with experience in conducting FGs. To avoid the dominance of professional feedback and blend the knowledge and expectations of other stakeholders, the identification of user needs was examined separately from 3 perspectives. For each FG, approximately 5 participants were invited. To attend the FG sessions, these children came to a meeting place with their parents. The children and their parents signed informed consent forms before each FG. For children, appropriate written and verbal information about the study and FG was provided, and informed consent was obtained from their parents to participate in the study. They also completed brief demographic questionnaires that provided information about age and sex, as well as their disease-related information.
We adopted the user-centered design approach (
User-centered design process in this study [
There was no standard regarding the components and content of a self-management system for cancer; thus, we conducted a review to identify the common features and components of such apps for children and adolescents with cancer and their families. The FG method was then adopted to identify user requirements. A total of 3 separate meetings (1 session per group) were held for children with ALL, their parents, and specialists. These meetings were held in the conference hall located on the fourth floor of the MAHAK. The sessions lasted 40 minutes for children (based on the FG guidelines for children) [
Conformity assessment was a team effort with the collaboration of end user representatives and design team members. On the basis of a series of high-level requirements identified in the previous step, we developed wireframe prototypes (the app’s user interface [UI] version, which is not executable and made by sketcher software). Wireframes were examined by 38% (3/8) of children with ALL (aged 7-14 years) and 20% (3/15) of parents. The aim of this session was to ensure the adaptation of the initial design to the users’ identified needs.
To prepare the educational content, we used guidelines provided by the Cancer Council [
The prototype was developed after requirement analysis, conformity assessment, and preparation of educational content. This version almost resembled the final version, and users were able to experience the app and communicate with a UI.
In the next stage, to ensure the accurate performance of the app, a preliminary evaluation was performed using think-aloud (TA) usability testing. An important advantage of using TA in the preliminary stage of design is the identification and correction of UI problems before developing the final version [
This evaluation was performed with 33% (5/15) of parents and 63% (5/8) of children with ALL, and 33% (5/15) of parents who were willing to participate in the study and had an Android smartphone. In this meeting, the researcher explained how the app works and is used. Each user then performed a number of predetermined tasks on the app while orally expressing their thoughts about functionality, problems, ideas, and exceptions. The researcher then recorded these ideas.
A final version was developed based on the results obtained from the preliminary evaluation. To ensure that the final version of the CanSelfMan app (a cancer self-management app) meets user expectations, an appropriate evaluation must be undertaken.
First, a review study was conducted as there were no guidelines or standards on the features and components of self-management apps for children with ALL. On the basis of the results, the modules of symptom evaluation, disease information, communication with specialists, and reminders had the highest frequency [
To identify the main themes, all sessions were recorded, transcribed, and thematically analyzed independently using HM and AM. Interestingly, the main themes obtained through thematic analysis were almost the same as those obtained from a review study conducted in the initial stage. Based on the themes identified from the FG sessions, the app modules were determined (
Demographic characteristics for children and parents.
Study phases | Focus group sessions | Think-aloud session | ||||||||
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Children (n=5) | Parents (n=10) | Children (n=5) | Parents (n=5) | ||||||
Age (years), mean (SD; range) | 9 (1.9; 7-14) | 35 (2.9; 28-43) | 11 (1.1; 7-14) | 32 (2.8; 25-46) | ||||||
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Female | 3 (60) | 6 (60) | 2 (40) | 3 (60) | |||||
|
Male | 2 (40) | 4 (40) | 3 (60) | 2 (40) | |||||
|
||||||||||
|
Married parent | N/Aa | 4 (80) | N/A | 5 (100) | |||||
|
Single parent | N/A | 0 (20) | N/A | 0 (0) | |||||
|
||||||||||
|
Secondary school | N/A | 1 (10) | N/A | 1 (20) | |||||
|
Diploma | N/A | 5 (50) | N/A | 2 (40) | |||||
|
Bachelor’s degree and above | N/A | 4 (40) | N/A | 2 (40) |
aN/A: not applicable.
Focus groups extracted main themes, app module, and their content [
These requirements were subsequently used to develop wireframe prototypes and technical requirements for the development phase. A total of 3 children with ALL (n=2, 67% girls; mean age 10, SD 1.4 years) and 3 parents (n=2, 67% men; mean age 39, SD 1.8 years) as representatives of the end users (selected from FG participants) were selected and took part in this session. In this session, two members of the design team (a software engineer and a medical informatics specialist) attended as well. The aim of this session was to confirm the initial design based on the users’ views and modify it if necessary. In this 45-minute session, a list of the app’s functionalities was first provided. Finally, for a better understanding of the user requirements, the wireframe was presented to the participants (
Example of app wireframe for conformity assessment sessions. ALL: acute lymphocytic leukemia.
In the next step, a 90-minute expert panel was held with oncologists (4 oncologists with 15 years of experience, a radiotherapy oncology subspecialty with 14 years of experience, and a pediatric subspecialty with 11 years of experience) and a medical informatics specialist to determine the educational content. After review by this group, 4 main guidelines were selected (the Cancer Council and the American Cancer Society’s guidelines for providing information and the Cancer Care Ontario and Children’s Cancer and Leukemia Group guidelines for preparing self-management content). Selected content was then translated (to Persian) and organized based on the Health Literacy Online guidelines. This guideline assists in the development of educational content that is understandable by people with different health literacy levels [
In stage 4, a prototype was implemented using the Java programming language and SQLite database in Android Studio. For the web-based version, we used the PHP programming language and MySQL database. The first prototype had five modules: information about ALL, self-management tips, self-assessment form, ask questions, and reminder function. This version was fully executable.
The first prototype was evaluated using the TA method with 10 representatives of the user groups (n=5, 50% children, with n=2, 40% girls; n=5, 50% parents, with n=3, 60% women). This method was performed individually. Before starting the test, in 5 minutes, some explanations about the app and TA evaluation were provided by HM. The app was then installed on the user’s smartphone, and some predetermined tasks were performed. At the same time, the user orally provided comments on the problems, ideas, functionality, and expectations. The researcher recorded each user’s comments. Some suggestions and problems expressed by children and parents at this stage are provided in
“I wish we could select a profile picture.”
“I worked with a game app before; it had a cartoon character. I wish this app had a cartoon character that I could see on every page. It would look more attractive.”
“In the symptom evaluation part, score smileys can’t be seen for symptoms of the last row. You have to scroll up every time to see them. I wish they were fixed so that it’d be easier to fill out the questionnaire, and you wouldn’t have to scroll up.”
“In the evaluation part, it’d be more practical if you could view the results in the form of charts and send them to a specific Oncologist.”
“The font is too small and illegible in the information about the disease part; I wish we could change the font size.”
“In my favorites part you can’t remove an item from the list. When I added a topic to the list, I couldn’t remove it later.”
“In the reminder part, you can’t choose all days of the week. You can select the minutes only in quarters. You can’t exit the app.”
Immediately after the preliminary evaluation, modifications were made, and the final version of the CanSelfMan app was developed. The app had 2 different versions for children and parents and a web-based dashboard for oncologists (
The ALL knowledge base provides information on the definition, etiology, diagnostic methods, medications, and common treatment protocols for ALL. The self-management module included information on identification of symptoms, evaluation, and control via pharmaceutical and nonpharmaceutical methods, physical exercise, and nutritional information. A standard Edmonton Symptom Assessment System–Revised questionnaire was used in the self-assessment report module. This questionnaire (on a 10-point scale) is commonly used in cancer care centers as a tool for the self-evaluation and reporting of symptoms by patients. After consulting with oncologists for legibility and to facilitate the completion of the form by children, a visual equivalent was used for the options for easier use and response [
The web-based version of the app provided a dashboard to view the reports and presented questions and answers to the patients and parents. This version was designed for oncologists. Its main page displayed the questions and reports received from the patients. The oncologist could select a question and answer it. In self-report management, the oncologist could view the reports sent by the users and, if necessary, make suggestions or send messages.
Owl character and the CanSelfMan (cancer self-management) app main page.
The CanSelfMan app (cancer self-management) screenshots of (ask question and self-assessment module).
Most new technologies are not popular among users as they do not participate in them or consider their needs [
In this study, we used a qualitative approach (FG) to identify system requirements and primary evaluations by collecting narrative information, including people’s experiences and feelings. This approach typically uses small sample sizes to investigate users’ expectations and beliefs regarding the natural environment rather than looking for generalizable outcomes for larger samples [
For example, to design Sisom (an app for symptom reporting by children with cancer and direct communication with health care specialists), Arvidsson et al [
In this study, we used the TA method to evaluate the CanSelfMan app prototype with the participation of two user groups (5 children and 5 parents). On the basis of the TA results, we developed the final version of the CanSelfMan app. Similarly, Baau and Markopoulos [
To develop an app for pain control and evaluation in adolescents with cancer, Jib et al [
The goal of designing this app was to support children with ALL and their parents in dealing with cancer and enable their communication with health care specialists. The end users of this app are classified into three general groups: (1) children aged >7 years who can use the app independently, (2) children aged between 5 and 7 years who cannot use the app independently and need the help of parents, and (3) parents who can use the app and its features independently or act as a proxy for using this app for their children aged <5 years. A web-based version was also developed for oncologists, which provided interactions with children and parents. This interaction included questions and answers about the disease and treatment or requests for changing the in-person appointment dates. Self-assessment, symptom reporting to the oncologist, and receiving feedback create an information flow that increases the interaction between patients or parents and oncologists [
In this study, we developed the CanSelfMan app in 2 different versions for children aged >7 years, and another version for their parents can be used for children aged <7 years. One of the highlights of our study was the participatory design approach to developing the app. All stages of app development and evaluation were performed with the participation of end users. This approach, owing to the focus on users and their needs, can increase user acceptance and user satisfaction with the final product. Another key strength of our study was the presence of people from different academic disciplines or professional specializations in the design team (software engineers, medical informatics specialists, oncologists, pediatricians, and psychologists). This variety of expertise and differing views benefited the study and helped us cover different aspects of the system and respond to users’ needs from a broader and more diverse perspective. In addition, most of the mHealth interventions focused on children aged >8 years, and few studies targeted those aged <8 years. A reason for this might be the uncertainty about children aged ≤7 years regarding their ability to understand information about cancer and symptom assessment. However, evidence has shown that most children, aged as young as 5 years, can fill in symptom assessment questionnaires alone or with their parents’ help [
The main limitation of this study was related to the small number of participants in the requirement analysis and evaluation phases. On the other hand, the CanSelfMan app was developed based on the requirement analysis of children with ALL and their parents in only 1 cancer treatment center. Therefore, the generalization of the study findings is limited because of the fact that the data were gathered from a single facility with a limited age group of patients. We accepted that this may have increased the risk of bias. It is likely that the participants’ views in this study are not necessarily those of all children with ALL or their parents. Therefore, additional research is needed to examine more children’s and parents’ perspectives before wider implementation. However, as the purpose of this study was to develop a self-management system and not to investigate the effect of this app, the small number of participants in this process was not an obstacle to achieving this goal. We conducted only a primary usability evaluation; thus, future studies should include a larger sample size with a wider age range of participants and allocate more time for participants to test the UI and evaluate usability, which will be the focus of our future study. In addition, the clinical findings of this intervention have not yet been studied; thus, further clinical trials are required to demonstrate the efficacy of this product in relation to routine care.
The use of mHealth can facilitate access to accurate information about cancer in patients and their families. To access these services, users should only have a smartphone and little knowledge about the use of these tools. Despite these confirmed advantages, most mHealth studies have been conducted in developed and high-income countries, and the share of underdeveloped or developing countries in these studies is minimal. Meanwhile, a rise in the incidence rate of childhood cancer is predicted in future years (which will mainly occur in LMICs). Therefore, we developed a CanSelfMan system (smartphone app + web-based dashboard) to enhance self-management skills in children with ALL and their parents or caregivers. The CanSelfMan app can support these groups by providing access to reliable information and symptom management skills and facilitating communication between child/parents and oncologists. It can also be used in specialized cancer centers, especially LMICs, to increase access to these services. Future evaluation studies need to investigate the program’s effectiveness and cost-effectiveness.
The CanSelfMan (cancer self-management) app web version tutorial.
The CanSelfMan (cancer self-management) app tutorial.
acute lymphocytic leukemia
focus group
low- and middle-income country
mobile health
think-aloud
user interface
This study was conducted as part of the PhD study of HM at the Shahid Beheshti University of Medical Sciences, Tehran, Iran.
None declared.