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Cancer survivors living in rural areas experience unique challenges due to additional burdens, such as travel and limited access to specialists. Rural survivors of breast cancer have reported poorer outcomes, poorer mental health and physical functioning, and lower-than-average quality of life compared to urban survivors.
To explore the feasibility and acceptability of developing a mobile health survivorship care app to facilitate care coordination; support medical, psychosocial, and practical needs; and improve survivors' long-term health outcomes.
An interactive prototype app, SmartSurvivor, was developed that included recommended survivorship care plan components. The prototype's feasibility and acceptability were tested by a sample of breast cancer survivors (n=6), primary care providers (n=4), and an oncologist (n=1).
Overall, both survivors and providers felt that SmartSurvivor was a potentially valuable tool to support long-term survivorship care plan objectives. Portability, accessibility, and having one place for all contact, treatment, symptom tracking, and medication summaries was highly valued.
Our pilot study indicates that SmartSurvivor is a feasible and acceptable approach to meeting survivorship care objectives and the needs of both breast cancer survivors and their health care providers. Exploration of mobile health options for supporting survivorship care plan needs is a promising area of research.
Cancer patients are surviving longer. Since the early 1990s, the overall cancer death rate has steadily declined and the 5-year survival rate is now 69%, up from 49% in the 1970s [
Most breast cancer survivors who do not die of their cancer may die from conditions that can be managed and are modifiable through lifestyle changes (eg, respiratory and heart disease) or screening (eg, colon cancer) [
One strategy to support survivors is through the development of comprehensive survivorship care plans (SCPs), which offer a blueprint for long-term management and a means to support follow-up care coordination and communication. Improvements in the quality of cancer patient-provider communication are associated with more participatory decision making, improved medical information seeking and understanding of information, improved facilitation of information exchange, reduced depression and other negative psychosocial needs associated with survivorship, and improved quality of life [
However, SCPs are not consistently received by cancer patients or their care providers [
The unique challenges faced by rural survivors require unique and targeted interventions that mitigate survivorship planning and care barriers associated with residing in rural locations [
The most common format for distributing SCPs is as a written, hard-copy format. Characteristics of static content and lack of portability may contribute to the perception of their uncertain value and limited utility in easing the transition from active treatment into survivorship by both survivors and providers [
This study explores the feasibility and acceptability of an mHealth app, SmartSurvivor, that incorporates recommended components of a survivorship care plan into a mobile survivorship monitoring and management app for rural breast cancer survivors. It also collects system development requirements and feature enhancements for ensuring the app will enhance survivor self-efficacy, improve patient-provider communication, support adherence to SCP recommendations, and promote decision making among rural breast cancer survivors and their providers.
Between September and December 2014, we undertook a pilot study to evaluate whether converting an SCP into a mobile app that includes IOM-recommended content for survivorship care planning is a feasible and acceptable option for breast cancer patients who have completed active treatment. We also evaluated whether this mobile app could be a tool that can assist providers in their care decision making with breast cancer survivors.
Development was undertaken in two phases. In the first early design phase, two members of our research team and a graphic designer used paper prototyping and storyboarding to assess design ideas (see
In the second phase, we utilized Axure (Axure Software Solutions), a layer-based wireframe, rapid-prototyping software tool that allows linkages and dynamic interactions between pages and screens presented in a mobile phone app to simulate real-time interactions and navigation. Axure facilitated assessment of features such as flexibility of drop-down lists and movement between screens, as well as readability, navigation, and size of text fields that could impact acceptability of the app [
Log-in Screen and Main Menu (see
Medical Profile, which includes General Information; Care Team (past, current); Treatment Summary (diagnosis, radiation treatment summaries, etc); and Follow-Up Care (eg, ongoing toxicities to track, wellness/concerns, recommended follow-up schedule/frequency, etc) (see
Journal and Reports component, which includes a tracking tool for self-monitoring and output of logged Journal data (see
Calendaring link-in for Reminders, Appointments, and Notifications, including an Alerting function linked to Follow-Up Care and Journal logs to, for example, issue an alert if the survivor is dizzy for 3 days (see
Tips and Tools that deliver tailored tips to survivors based on data input into their Journal (
A mobile phone audiotaping link-in for documenting notes, appointment questions, etc.
“Mock” patient health information entered into SmartSurvivor was extracted from samples provided by Journey Forward's Survivorship Care Plan Builder [
This study received University of Washington Institutional Review Board approval as an exempt study. Informed consent was obtained from all individual participants included in the study.
Given the objective of supporting communication and coordination of care, we included both breast cancer survivors and providers in our testing sample to ensure the feasibility of SmartSurvivor for meeting the needs of all end users while minimizing barriers to its utility, feasibility, and acceptability. A convenience sample of breast cancer survivors (n=6), primary care providers (n=4), and an oncologist (n=1) were recruited to participate as testers through contacts of one of the study's investigators. Survivors ranged between 2 months and 5 years postactive treatment and lived in an urban area. All primary care providers had prior experience working in rural settings in which they saw breast cancer patients for ongoing care, including cancer surveillance. All testers owned a mobile phone.
Prototyping development.
SmartSurvivor prototype screens.
Testing sessions lasted between 45 and 60 minutes and were led by a research team member with expertise in usability testing accompanied by a notetaker. Sessions were held at the location and time convenient for each tester and utilized the talk- or think-aloud protocol, which is a widely used method for capturing the usability of an mHealth app [
Following each session, the testing team collated their notes and observations in a debriefing session. The final set of notes was summarized and the content analysis method [
Six primary themes emerged from the analysis (see
Overall, both survivors and providers were positive about the value of using SmartSurvivor to support survivorship care objectives, thought it would be easy to use, and viewed SmartSurvivor as a way to make the SCP more accessible and useful. All testers were familiar with, and comfortable using, a mobile phone and regularly accessed the Internet on their mobile phones to access information, including health information.
Having one place to file all contact and treatment information is supportive of coordination of care and provider-provider communication. Overall, survivors were enthusiastic about having one location as a repository for medical team contact information, treatment records, insurance numbers, etc. SmartSurvivor was seen as a good
I have a hard time remembering all the doctors I have, when I've seen them.
I'm always asked what medications I'm on so this would make it a lot easier.
Providers also saw the ability to obtain treatment and medication summaries from one source as useful, stating it would streamline the fact-finding portion of an appointment:
If I had a patient experiencing continued dizziness, being able to see exactly what treatment she's had will help me figure out if this is a side effect of treatment or if it's unrelated.
Providers also saw SmartSurvivor as a way to support coordination of care with specialists when consultation about the patient is needed.
The combination of Journaling symptoms and their output—Reports—may improve self-efficacy for management of survivorship needs and be supportive of improved patient-provider communication and provider decision making. Survivors not only need to track symptoms and remember appointments, they are encouraged to engage in wellness activities, monitor their sleep and eating, and track their mood. Some survivors carried notebooks, some used the
I have to be my own patient advocate all the time and this will help me track what I need to track. And then, when I see the doctor I can give her something concrete like this graph, instead of saying, “yeah, I was really tired last week,” I can show her how tired, for how long.
I'm on medication that increases my risk of ovarian cancer so I need to track any spotting. This would make it much easier than the piece of paper I'm using now.
In addition, survivors stated that being able to see results, notice trends, and track patterns would be very useful.
Theme 1: SmartSurvivor provides one-stop shopping.
Theme 2: Survivors and providers are empowered by better tracking and communication.
Theme 3: Portability is a plus.
Theme 4: Interoperability/integration of SmartSurvivor with other information sources is a concern.
Theme 5: Survivors are uncertain about being reminded.
Theme 6: SmartSurvivor needs to be tailored for rural users.
For providers, the Report function was seen as valuable for accurate and informative patient reporting, as well as for saving time during a visit:
Seeing a graph of what symptoms the patient is having and when is more informative.
We have so little time during an appointment; this would help me spend more time with my patients.
It was also seen as informing decision making about a patient's care:
Let's say she's experiencing pain and swelling under her right arm. It's on the graph but I also see she started a new exercise regimen. Instead of sending her back to her surgeon 250 miles away in a snowstorm, we might explore other options first, like get a CT or MRI scan locally. Plus, I could easily coordinate with her surgeon about this option since all the contact information is right here.
Both providers and survivors stated that being able to create overlays of reports, for example, a graph that combines pain with sleep or exercise with mood, would be even more useful than individual reports. The SmartSurvivor email function that allows the survivor to email an output of a Report in Excel or graph form in advance of a medical appointment was seen as supporting communication and coordination of care by both survivors and providers. Both survivors and providers viewed the ability to record questions and comments before or after a medical appointment as improving patient-provider communication; survivors appreciated the ability to document questions and concerns before medical visits and providers thought this feature would encourage more productive communication during visits.
Within this sample of mobile phone users, the phone is carried everywhere and used routinely as part of everyday living. In comparison, the standard, paper-based SCP is a heavy notebook that is a burden to carry, as reflected in the following quote:
I was told I shouldn't lift more than 5 pounds after my surgery so this [notebook] just sat on the table for months!
Because their mobile phones are always available, survivors liked the idea of having an app that is not only convenient but very portable for meeting their survivorship care needs. Primary care providers reported their survivor patients rarely brought the entire SCP notebook to an appointment even when first transitioning from active treatment, but occasionally brought a subset of its pages.
Some survivors are using mHealth tools like MyFitnessPal to track their diet and exercise. Although not developed with survivors in mind, having the capacity to link or integrate data from these different apps with SmartSurvivor would be beneficial and enhance its use as the primary support tool. Survivors who are seen in multiple health care systems also mentioned interoperability as beneficial:
I go to three different doctors and none of them can see the other's records so I have to coordinate my own care.
Providers also brought up interoperability between health care systems as a possible barrier and expressed concerns about data quality if SmartSurvivor information were input by hand versus through the electronic medical record system.
In addition to the Journal and Report features, the Reminders/Notifications/Tips functions were seen as important to ongoing surveillance for both survivors and providers. In general, reminders regarding follow-up tests and appointments were viewed as useful, but this appeared to depend on status within the survivorship continuum. Survivors less than 3 years postactive treatment were positive about Reminders. Survivors over this point stated they might turn this feature off because they did not want to be reminded about their cancer. In fact, one survivor close to her 5-year anniversary date stated, “I don’t want to obsess over my care, over my cancer. I just want to live my life.”
Overall, providers also found the Reminder function as useful, but only if recurring reminders could be recalibrated easily if an appointment is missed. This would be particularly important for rural survivors who frequently need to reschedule appointments due to transportation issues (eg, weather disruptions and distance). Providers also noted that background information would be helpful in deciding whether a routine appointment could be completed locally rather than by a specialist who practices hundreds of miles away.
Several issues specific to rural survivors' needs were brought up by providers. Primary care providers reported that even though the recommended health literacy level for the SCP is around 8th grade, survivors in rural settings often have a lower literacy level and a large proportion are not native English language speakers. For patient education, providers reported using photos, visual cues, and simplified language. Another issue is tracking symptoms, wellness, mood, etc; again, survivors with lower literacy levels may have different needs. One provider stated the following:
It has to be simple for most of my rural patients. And I need to instruct a patient in how to record symptoms, to record simple events and at the time (or closest to the time) they're actually occurring. If the app had a way to click to capture symptoms, then you could potentially generate time of day and frequency just from that. Simpler is better for tracking; if it gets too hard, my patients won't use it.
We successfully pilot-tested a prototype SmartSurvivor app that was both feasible and acceptable to a small sample of urban breast cancer survivors and health care providers and that could serve as the foundation for developing a tool to support rural breast cancer survivors. While some mHealth tools have been developed for survivors [
We identified key features that will be important to include in further development, as well as exploration of the SmartSurvivor app with a larger sample of both survivors and providers, including the following:
Simplifying the data input process for patients by (a) improving Journaling to include drop-down menus or other features that streamline the data input process and (b) enabling auto-capture of date and time.
Improving the data output feature by creating the ability to build overlays of individual graphs, for example, sleep, exercise, and pain.
Establishing interoperability between SmartSurvivor and other tools by (a) creating linkages between SmartSurvivor and electronic health record systems to increase confidence that clinical data (ie, appointments, medication lists and changes, and test results) are accurate and (b) enabling linkages with patient tracking tools such as Fitbit, MyFitnessPal, etc.
Those living in rural areas experience unique challenges in their survivorship care [
We believe that this pilot study establishes the foundation for future work on SmartSurvivor that will include a larger sample of rural survivors and providers to explore efficacy. A proposal is currently in process to conduct a randomized trial that will (1) compare SmartSurvivor use versus
A limitation of this work is the absence of rural breast cancer survivors, as well as inclusion of a single oncologist. However, including primary care providers with experience practicing in rural settings helped us capture some additional features to include in SmartSurvivor. This also helped identify a baseline of high-quality functional design requirements that will align the app with the needs of all its end users and minimize barriers to its use.
Our findings explore an area—mobile support for rural breast cancer survivors who have completed active treatment—that has received little attention in research studies and few efforts to address. The literature recommends that SCPs become portable, flexible, and easy to access and update as survivors' needs change along the survivorship continuum [
Feasibility and acceptability of an mHealth tool is only a first step. A factor in the development of any mHealth tool is its content. A recent review of the content available within mobile phone apps targeting cancer support reported that only 48.8% of mHealth tools surveyed had been developed by health care organizations and professionals [
For those in rural settings where barriers to optimal care and lower health outcomes have been well-documented [
Making the SCP accessible, portable, and
Institute of Medicine
mobile health
survivorship care plan
We wish to thank Meghan Fitzpatrick for assisting with Axure prototyping. We also wish to thank the volunteer breast cancer survivor and health care provider testers who participated in this study.
None declared.