Pilot Project: Creating an App That Helps Stroke Survivors and Their Caregivers

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

People have been using mobile devices more and more to help with health care. Stroke survivors often need to keep track of many things to maintain and improve their health. Mobile apps could help stroke survivors and their caregivers manage their health and health care.

Project Purpose

The researchers wanted to learn

• How stroke survivors and caregivers feel about apps
• What types of things they want apps to do
• What things make apps easy or hard to use

Methods

Using information from focus groups and interviews with stroke survivors and caregivers, the researchers developed a survey about what features and content might be useful in an app for stroke survivors.

The researchers sent the survey to 11.720 stroke survivors and caregivers. The team used the survey results to identify the app features that people thought would help stroke survivors take care of their health. They then built an app with these features and asked seven stroke survivors to test it.

Findings

The team received survey responses from 1,221 stroke survivors and 396 caregivers.

Stroke survivors and caregivers said they wanted an app to help them

• Schedule doctor appointments
• Remember when to take their medicine
• Keep track of their blood pressure
• Finds local resources to help them take care of their health

Stroke survivors but not caregivers said they wanted an app to help them track fitness and diet as well as communicate with others.

Older survivors were more concerned than younger people about getting trustworthy information. Older survivors and their caregivers were less likely to say that an app would be useful. Younger survivors were more interested than older people in finding stroke support groups, and they wanted an app to help with stroke rehabilitation exercises—for example, physical therapy exercises.

Based on these findings, the researchers created an app they called ComeBackStrong. The app included features to help stroke survivors and caregivers

• Schedule doctor appointments
• Learn about local support groups
• Get fitness and diet information
• Find local resources to help them take care of their health
• Provide reminders for taking medication

Stroke survivors who tested the app said reminders and alerts for medication were helpful. They suggested ways to make the app controls easier to use for people who may have trouble seeing or using the touch interface of a smartphone. They also gave feedback about making the app easier to navigate and customize.

Limitations

The app can be used only by people who have iPhones or Android phones. The app was tested by only seven people. If more people had been included in the testing, researchers might have learned about other ways the app could be improved.

Conclusions

The researchers created the ComeBackStrong app based on needs identified by stroke survivors and their caregivers.

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Mobile technology has been entering the medical field at a rapid pace. However, it is underutilized in patient-centered health care. Mobile applications (apps) may allow stroke survivors and caregivers to actively participate in risk factor management.

Project Purpose

The objective of the Mobile Apps (MAPPS): Patient and Caregiver Attitudes, Behaviors, and Knowledge project was to investigate how stroke survivors and caregivers feel about apps, determine what they consider to be desired features in apps, and identify any usability issues of apps to facilitate post-stroke care and needs.

Methods (participants, interventions, outcomes, settings; data sources, data analysis)

Study Design

A nationwide population-based survey consisting of 17 questions was distributed to 11,720 stroke survivors and caregivers via e-mail and postal mail. The survey was developed using formative focus groups in Brooklyn, NY and Centennial, CO. Qualitative information about current smartphone usage and interest in health-related apps was collected using focus groups and summative interviews. Stroke survivors conducted usability testing on the new app to make final improvements before the app was released and promoted to the public.

Participants, Interventions, Settings, and Outcomes

The study focused on stroke survivors and caregivers.

Quantitative and qualitative data were collected from a national survey, focus groups, and summative phone interviews. Outcomes of interest included current smartphone usage, interest in health-related apps, problems with existing mobile health applications, desired features and content, and user platform preferences. The goal of usability testing was to assess ease of use, ease of information input, and functionality.

Data Analysis

Throughout the project, the needs, attitudes, beliefs, knowledge, and behaviors of stroke survivors and caregivers concerning mobile technology were investigated based on gender, age, race, and ethnicity using χ2. Research specialists analyzed and interpreted the data collected during the summative phone interviews and the national survey. Usability testing results and validity of responses were analyzed using an external company.

Findings

Researchers explored preferences by gender, race/ethnicity, age, and education using χ2.

A total of 1,221 stroke survivors and 396 caregivers responded to the survey. Survey results demonstrated that

• Scheduling doctor/rehab appointments was the most preferred feature for survivors and caregivers of all ethnicities.
• The capability to track doctor appointments, medication schedules, and blood pressure were the most favored features of a mobile app in both groups.
• Stroke rehab exercise instructions were more often preferred as a feature by younger survivors, while older survivors were more interested in having an app that included trustworthy medical information.
• The ability to find local stroke-related resources using a mobile app was preferred by the majority of caregivers and stroke survivors.
• The ability to track fitness/diet was more desired by stroke survivors than caregivers. The ability for a mobile app to facilitate stroke survivors’ communication was highly favored by survivors while not considered useful by the majority of caregivers.

Building relevant apps requires feedback from users. The research team used feedback from stroke survivors and caregivers to identify the key features that they thought were necessary to build a stroke-dedicated app.

Stroke survivors who tested the app said reminders and alerts, including ones for medication, were helpful. They provided suggestions for ways to make the app controls easier to use for people who may have trouble seeing or using the touch features of a smartphone. They also gave feedback about ways to make the app easier to navigate and customize. 

Usability testing was conducted on iPhone and Android devices; the app (ComeBackStrong) is only available in the Apple and Google Play stores.

Conclusions

The ComeBackStrong mobile app was developed for stroke survivors based on their specific needs and concerns. Throughout the project, stroke survivors and caregivers (who were stratified by age, gender, and race/ethnicity) provided valuable data that allowed the research team to focus on the most important aspects of this mobile app. The results from the national survey suggested that there was a need for patient-centered mobile health apps in personal health management for stroke survivors and caregivers.