DOI: https://doi.org/10.21203/rs.3.rs-1700972/v1
Background: Self-management involves taking responsibility for your own health and taking the initiative to do so. This can be accomplished by learning information and skills that will help you deal with the difficulties you may encounter during and after your cancer treatment. The aim of this study was to develop a self-management mobile app for women with breast cancer and evaluate of in Iran impact it on the quality of life of patients.
Method: This study is a methodological study in 2021. We developed the app during three phases. The QLACS questionnaire and Excel software were used to collect and analyze the data. A total of 24 breast cancer patients were included in the study.
Result: Among the most significant changes were in the Quality of Life level, highest respectively: social avoidance (pre: 6.41 – post: 3.56), negative feelings (pre: 5.93 - post: 3.40), sexual function (pre: 6.80 - post: 5.04), sexual interest (pre: 6.41 - post: 4.75) and pain (pre: 6.37 - post: 4.97). And least the changes respectively: distress-family (pre: 7 - post: 7), distress-recurrence (pre: 4.49 - post: 4.38), benefits (pre: 2.47 - post: 3.12), appearance (pre: 4.10 - post: 3.32).
Conclusion: Breast cancer patients' quality of life can be improved by providing more targeted content through more accessible tools such as mobile apps.
The most common type of cancer in women and the one with the highest mortality rate is breast cancer (1) Breast cancer diagnosis can be a very unpleasant and unimaginable experience for any woman that can disrupt her whole life (2), The incidence of breast cancer dramatically enhancing in most developing countries, including Iran (3), In low- or middle-income countries, lifestyle changes like obesity, dietary and smoking patterns have the greaimplementation impact on breast cancer rates (4) as well as more than 55% of breast cancers terminating to death in these countries (5). According to the report World Health Organization, in 2018 the estimated number of recently diagnosed breast cancer cases overall was more than two million people around the world (6), which was the highest among women’s cancers. More than 12,000 women are determined with breast cancer every year in Iran (7). The peak age of its pervasiveness in Iranian women is identified as the fourth and fifth decades of life and is one decade lower than the age of its worldwide prevalence (8).
Breast cancer and its treatment have a huge effect on psychological, social, emotional, and physical well-being of women with breast cancer (9). The breast cancer treatment plan includes surgery, chemotherapy, radiation therapy, and hormonal therapy based on the stage of a cancer diagnosis for each patient (10); In addition, breast cancer therapies have been linked with physical side effects such as pain, fever, diarrhea, dry skin, fatigue, and so on (3) despite the beneficial effects of treatment methods on increasing patient survival, its impression on various psychosocial aspects, for example, stress, depression, indecision about the future, and worry of cancer recurrence and role of the patient in society are among the concerns of women with breast cancer (11).
To live well with breast cancer, women must manage their symptoms independently of their doctor in order to manage their symptoms. Breast cancer is regarded currently as a chronic disease. In chronic disease management, self-management is one of the emerging operational strategies (12). The researchers have found that self-management leads to symptom management, lifestyle management, and the promotion of patient health (13). In breast cancer patients, self-management strategies include awareness about disease conditions, increased motivation, and self-efficacy (14). Patients with an increased awareness of this disease can handle it better (13). Thus, the use of self-management apps promotes patients' health and causes behavioral changes (15).
Mobile health is fundamental to the eventual fate of illness and health management (16). The results of several studies have demonstrated that using mobile apps to help patients with breast cancer has numerous benefits, including improved information, increased physical activity, decreased nervousness and anxiety, developed fearlessness, and improved personal satisfaction (17, 18). In light of the existing contexts, women's urgent need for self-management, and the availability of effective mobile apps, we aim to design, develop, and evaluate a mobile self-management app for Iranian women with breast cancer.
This methodological study aimed to develop a mobile app self-management for Iranian women with breast cancer. In order to achieve this aim, we conducted our research in three phases. The first phase of identifying educational content and designing user experience, the second phase of developing and implementing the app, and the third phase of evaluating of pre-and post-implementation. Research phases are illustrated in Fig. 1. The study protocol was approved by the ethics committee of Urmia Medical University, Urmia, Iran.
First phase
We conducted a descriptive cross-sectional study in 2020 with 103 women breast cancer patients in order to identify the educational content used in the app (19). During this phase, we formed an expert team (2 health information technology experts and 2 user experience experts) to design the user interface flow of the self-management app. Balsamiq Mockups software was used to better understand the user experience flow. The user experience flow of the app was evaluated by 6 patients of the target community using the Think aloud method. Finally, by applying the opinions of the evaluating group, the final version of the user experience flow was considered for app development.
Second phase
At this phase, the development of the mobile app in the Android studio environment was made. Also, the open-source database management system My Structured Query Language (SQL server), which uses a common computer language and is compatible with android, was used to develop a database. Our sampling was purposive. Based on previous studies, we could recruit 25–30 patients (20, 21). Ultimately, 24 patients participated in the project. This mobile app was installed for women with breast cancer who were referred to Omid Hospital in Urmia (West Azerbaijan Province, Iran) to follow their treatment. Due to the COVID-19 pandemic and special conditions of these patients, in the first meeting with these patients, the contact information (Email or Phone number) was obtained from them so that we could continue to communicate virtually. Inclusion criteria were personal satisfaction, age between 35–60 years, having a diploma or more, and having a smartphone with an Android operating system. Using Zoom software, we organized an online workshop to introduce the self-management app project and provide questionnaires to participants. As part of the workshop, participants learned about the self-management app development project, as well as the project as a whole.
Third phase
The first step was to provide participants with the QLACS (Quality of Life in Adult Cancer Survivors) questionnaire (22), which they had to complete. This questionnaire consists of 47 questions and the score range is 1–7 (1 = never and 7 = always). We designed the Persian version (23) of the questionnaire QLACS in Google Forum and provided the link (URL) to the participants. After completing and collecting the questionnaires, we provided the final version of the self-management app to the participants and asked them to use it for three month (1 May to 30 July − 2021). A contact us section was available in the app, where users could ask questions at any time. After the end period (30 July) of using the self-management mobile app, we asked the participants to complete the QLACS questionnaire again.
In a cross-sectional descriptive study to identify the desired content for the self-management app of women with breast cancer, we accessed 5 major categories (information acquisition, lifestyle management, psychological management, symptom management, and change compatibility) and 31 sub-categories, most of which directly train self-management skills (19). According to experts, the following features should be included in the app user experience flow. The self-management app for women with breast cancer should be able to be updated to provide new content to users, and if there is a possible problem with the app, it should be resolved in this way. To use the mobile app, users must register (quick and easy registration). Since this mobile app uses a lot of textual content, it must have the functionality to allow users to customize font size, font color, and theme color when reading the text. Content should also have a share button and a bookmark. In this mobile app, there is a section as a reminder that users can set sensitive times (Taking medicine or visiting the doctor). In Fig. 2, you can see the user experience flow of the self-management app for women with breast cancer, as well as in Fig. 3, pages of the app version developed in the Android Studio environment.
As seen in Table 1, 12 (50%) of participants were between ages of 51–60. 21 (87.5%) married, 12 (50%) had High school diploma degrees and also, 10 (41.66%) of participants between the 3 till 5 years have been using a smartphone.
| Characteristic Value | |
|---|---|
| Age (years), n, (%) | |
| 35–40 | 4 (16.66%) |
| 41–50 | 8 (33.33%) |
| 51–60 | 12 (50%) |
| Marital status n, (%) | |
| Married | 21 (87.5%) |
| Unmarried | 3 (12.5%) |
| Education, n, (%) | |
| High school diploma | 12(50%) |
| Some college credits, no degree | 4 (16.66%) |
| Bachelor’s degree | 6 (25%) |
| Master’s degree | 2 (8.33%) |
| Duration of having a smartphone (years), n, (%) | |
| 1–2 | 8 (33.33%) |
| 3–5 | 10 (41.66%) |
| 5 - up to | 6 (25%) |
In the pre and post-implementation, the participants completed a QLACS questionnaire. In section generic (Table 2), the average of negative feelings of patients in the pre-implementation was 5.93, which decreased to 3.40 in the post-implementation. The reduction in negative feelings is caused by the use of the self-management mobile app. This reduction in negative feelings increases positive feelings in these patients, which were 2.93 on average in the pre-implementation and increased to 4.66 in the post-implementation. Cognitive problems had an average score of 4.52 in the pre-implementation, which decreased to 3.75 in the post-implementation, which shows the effectiveness of the self-management mobile app on women with breast cancer. Pain averaged 6.37 in the pre-implementation, which dropped to a minimum of 4.97 in the post-implementation, which can also be considered positive. In sexual interest, energy/fatigue, and sexual function, there are still minimal reductions in pre-implementation and post-implementation. But social avoidance in the pre-implementation decreased from 6.41 to 3.56, which was a very significant decrease. In fact, this reduction reflects the greater impact of the self-management mobile app in this area.
| Generic | Items | Mean | |
|---|---|---|---|
| Pre | Post | ||
| Negative feelings | You were bothered by mood swings | 5.32 | 3.33 |
| You felt blue or depressed. | 5.11 | 3.1 | |
| You worried about little things | 6.4 | 4.03 | |
| You felt anxious | 6.9 | 3.15 | |
| Mean | 5.93 | 3.40 | |
| Positive feelings | You enjoyed life | 2.55 | 4.23 |
| You were content with your life | 2.54 | 5.59 | |
| You felt happy | 3.25 | 4.58 | |
| You had a positive outlook on life | 3.36 | 4.23 | |
| Mean | 2.93 | 4.66 | |
| Cognitive problems | You were bothered by having a short attention span | 4.25 | 4.12 |
| You had trouble remembering things | 5.23 | 4.36 | |
| You had difficulty doing activities that require concentration. | 4.25 | 3.14 | |
| You were bothered by forgetting what you started to do | 4.36 | 3.36 | |
| Mean | 4.52 | 3.75 | |
| Pain | You were bothered by pain that kept you from doing the things you wanted to do | 6.25 | 4.52 |
| Your mood was disrupted by pain or its treatment | 6.63 | 4.36 | |
| Pain or its treatment interfered with your social activities | 6.25 | 5.26 | |
| You had aches or pains | 6.36 | 5.75 | |
| Mean | 6.37 | 4.97 | |
| Sexual interest | You lacked interest in sex | 6.45 | 5.02 |
| You avoided sexual activity | 6.36 | 4.48 | |
| Mean | 6.41 | 4.75 | |
| Energy/fatigue | You didn’t have the energy to do the things you wanted to do | 6.52 | 5.68 |
| You felt tired a lot | 6.35 | 6.01 | |
| You had the energy to do the things you wanted to do | 3.05 | 4.85 | |
| You felt fatigued. | 6.52 | 5.06 | |
| Mean | 5.61 | 5.40 | |
| Sexual function | You were dissatisfied with your sex life | 6.75 | 5.02 |
| You were bothered by being unable to function sexually | 6.85 | 5.06 | |
| Mean | 6.80 | 5.04 | |
| Social avoidance | You avoided social gatherings | 6.36 | 4.09 |
| You avoided your friends | 6.65 | 3.04 | |
| You were reluctant to meet new people | 6.25 | 3.06 | |
| You were reluctant to start new relationships | 6.36 | 4.04 | |
| Mean | 6.41 | 3.56 | |
According to the cancer-specific section of Table 3, patients' financial problems increased from 5.50 to 5.99. It is worth noting that the self-management mobile app had no idea about this problem. In benefits, the pre-implementation had an average of 2.74, which increased slightly to 3.12 with a slight increase in the post-implementation, although this increase is very small, but can indicate a change in patients' attitudes toward their disease after using the self-management mobile app. In the post-implementation and pre-implementation, distress-family had an average of 7, which means that it was registered without any changes, no doubt this lack of change shows the importance of this issue. The appearance had a mean of 4.10 in the pre-implementation, which dropped to 3.32 in the post-implementation. Distress-recurrence had a mean of 4.49 in the pre-implementation, which decreased to 4.38 in the post-implementation, this was the lowest decrease.
| Cancer specific | Items | Mean | |
|---|---|---|---|
| Financial problems | Pre | Post | |
| You had money problems that arose because you had cancer | 6.00 | 6.00 | |
| You had financial problems due to a loss of income as a result of cancer | 6.00 | 6.00 | |
| You had financial problems because of the cost of cancer surgery or treatment | 5.00 | 5.60 | |
| You had problems with insurance because of cancer | 5.00 | 6.36 | |
| Mean | 5.50 | 5.99 | |
| Benefits | You felt that cancer helped you to recognize what is important in life | 3.20 | 4.23 |
| You felt better able to deal with stress because of having had cancer | 3.42 | 4.25 | |
| You realized that having had cancer helps you cope better with problems now | 2.09 | 2.88 | |
| You appreciated life more because of having had cancer | 1.20 | 1.15 | |
| Mean | 2.47 | 3.12 | |
| Distress-family | You worried about whether your family members might have cancer-causing genes | 7.00 | 7.00 |
| You worried that your family members were at risk of getting cancer | 7.00 | 7.00 | |
| You worried about whether your family members should have genetic implementations for cancer | 7.00 | 7.00 | |
| Mean | 7.00 | 7.00 | |
| Appearance | You felt unattractive because of your cancer or its treatment | 4.23 | 3.52 |
| You were self-conscious about the way you look because of your cancer or its treatment | 4.12 | 3.24 | |
| You felt people treated you differently because of changes to your appearance due to your cancer or its treatment | 3.82 | 3.12 | |
| You were bothered by hair loss from cancer treatment | 4.21 | 3.40 | |
| Mean | 4.10 | 3.32 | |
| Distress-recurrence | You worried about cancer coming back | 4.52 | 4.08 |
| Whenever you felt pain, you worried that it might be cancer again | 4.82 | 4.74 | |
| You were preoccupied with concerns about cancer | 4.12 | 4.32 | |
| Mean | 4.49 | 4.38 | |
Figure 4 shows the changes in the quality of life of breast cancer patients in the post-implementation and pre-implementation spider chart.
To instruct self-management skills to women with breast cancer, our app has five main themes: information acquisition, lifestyle management, psychological management, symptom management, and change compatibility (19). Obviously, to determine the main theme for an education-based app, the main themes for training must first be identified, and then a context must be created (24). Studies similar to ours mostly used the following themes: analyzing side effects, lifestyles, and social activities (25, 26). In order to design the app user interface to better communicate with patients, we sought out experts in user experience and software in these fields. This method of designing an app's user interface and user experience flow has been used in a number of studies (27). It is important to note that a good user interface design is very important to a mobile app's acceptance by its users (28).
According to our findings, the quality of life of cancer patients was low in some cases in the pre-implementation, but after patients used the self-management app, changes in the quality of life of these patients were observed. These changes are shown in Tables 2 and 3 and also in Fig. 1. The highest level of change was in these cases, respectively: social avoidance (pre: 6.41 – post: 3.56), negative feelings (pre: 5.93 - post: 3.40), sexual function (pre: 6.80 - post: 5.04), sexual interest (pre: 6.41 - post: 4.75) and pain (pre: 6.37 - post: 4.97). The cases that received the most impact from the self-management mobile app are definitely among the important ones that affect the quality of life of cancer patients. Many studies have shown that women with breast cancer reduce their presence in the community due to changes in the appearance of their bodies (29, 30). There are also many other studies on the issue of sexual decline and its function among married women (31, 32). In our study, 21 of the 24 participants were married. According to our findings, the performance and attractiveness of sexual relations in these patients have improved to a relatively good extent due to educational materials in the mobile app entitled strategies for improving sexuality and teaching auxiliary methods on these issues.
Social avoidance (reluctance to meet and relate to people) and having negative feelings is a very important issues for breast cancer patients. According to studies conducted in this field, many solutions to reduce negative emotions (mood swings, feeling anxious, and feeling blue) and encourage participation in the community of these patients have been suggested, including meditation and management of negative emotions (19, 33). These items were made available to participants in a self-management app (psychological management) in various formats (text, video) (19). According to our findings, in these patients, there are significant changes in reducing negative emotions and increasing their desire to be in the community compared to the pre-implementation.
Based on the findings in our study the low level of change was in these cases, respectively: distress-family (pre: 7 - post:7), distress-recurrence (pre: 4.49 - post: 4.38), benefits (pre: 2.47 - post: 3.12), appearance (pre: 4.10 - post: 3.32). Distress-family did not change during the pre-and post-implementation, and all patients with the disease are always concerned about the possibility that their family members may also have cancer and that another family member may be involved. The same anxiety about not improving or returning cancer after recovery has also affected the minds of these patients and has negative effects on their quality of life (34). Cancer affects the whole life of the affected person and even their partners at a very high level due to physical, financial, mental, and psychological problems. In fact, it is very difficult for a person and their family to accept this disease, so the issue of the benefit of this disease and the appearance affected person (especially if she is a woman) is very difficult and time-consuming for the patient (35–37).
The self-management mobile app in the generic section had a greater impact on quality of life than those in the cancer-specific section. As shown in the results, the self-management mobile app orients to general topics and content in order to increase the quality of life for breast cancer patients. We believe that the presence of both IOS and Android versions along with a larger number of patients will produce more accurate results in this study. But this was our limitation and we were unable to do so due to a lack of financial resources and lack of a dedicated budget for this project. We were also limited by the fact that our study population consisted of women from only one province (Urmia) in Iran, and we were unable to consider patients (women with cancer) from other cities because of low budget. Even though our study city had a large population and met our needs, a broader study across the country and with two versions IOS and Android could produce more desirable and broader results. This might be a future research project.
Breast cancer patients' quality of life can be improved by providing more targeted content through more accessible tools such as mobile apps. This study was conducted to show that by developing a self-management app, women with breast cancer can improve their quality of life by increasing their self-management skills.
Application
Quality of Life in Adult Cancer Survivors
iPhone OS
Uniform Resource Locator
Acknowledgments: Without the patients' participation, this study would not have been possible. Thanks to them all.
Availability of data and materials: All data and information created or examined during this study are contained in this published article.
Author contributions: Z.M. conceived and designed the evaluation and drafted the manuscript. M. J. participated in designing the evaluation, performed parts of the statistical analysis, and helped to draft the manuscript. H. A. and S. E. re-evaluated the clinical data, revised the manuscript, performed the statistical analysis, and revised the manuscript. All authors read and approved the final manuscript.
Consent for publication: Not applicable.
Conflict of Interests: Not applicable.
Funding: This paper is derived from MSc thesis of Health Information Technology (No. 9872), supported by the Research Council of Urmia University of Medical Sciences, Urmia, Iran.
Ethical approval: By the Ethics Committee of Urmia University of Medical Sciences (ID: IR.UMSU.REC.1398.374).