Development of an electronic health message system to support recovery after stroke: Inspiring Virtual Enabled Resources following Vascular Events (iVERVE)

Abstract

Dominique A Cadilhac,1,2 Doreen Busingye,1 Jonathan C Li,3 Nadine E Andrew,1,4 Monique F Kilkenny,1,2 Amanda G Thrift,1 Vincent Thijs,2,5 Maree L Hackett,6,7 Ian Kneebone,8 Natasha A Lannin,9,10 Alana Stewart,11 Ida Dempsey,12 Jan Cameron,1,13 1Stroke and Ageing Research, Department of Medicine, School of Clinical Sciences at Monash Health, Monash University, Melbourne, VIC, Australia; 2Stroke Division, Florey Institute of Neuroscience and Mental Health, The University of Melbourne, Melbourne, VIC, Australia; 3Department of Electrical and Computer Systems Engineering, Monash University, Melbourne, VIC, Australia; 4Department of Medicine, Central Clinical School, Monash University, Melbourne, VIC, Australia; 5Department of Neurology, Austin Health, Melbourne, VIC, Australia; 6The George Institute for Global Health, University of New South Wales, Sydney, NSW, Australia; 7Faculty of Health and Wellbeing, University of Central Lancashire, Preston, UK; 8Graduate School of Health, University of Technology Sydney, Ultimo, NSW, Australia; 9College of Science, Health and Engineering, School of Allied Health, La Trobe University, Melbourne, VIC, Australia; 10Occupational Therapy Department, Alfred Health, Melbourne, VIC, Australia; 11Stroke Foundation, Melbourne, VIC, Australia; 12Consumer Representative, Melbourne, VIC, Australia; 13Australian Centre for Heart Health, Royal Melbourne Hospital, Melbourne, VIC, Australia Purpose: Worldwide, stroke is a leading cause of disease burden. Many survivors have unmet needs after discharge from hospital. Electronic communication technology to support post-discharge care has not been used for patients with stroke. In this paper, we describe the development of a novel electronic messaging system designed for survivors of stroke to support their goals of recovery and secondary prevention after hospital discharge. Participants and methods: This was a formative evaluation study. The design was informed by a literature search, existing data from survivors of stroke, and behavior change theories. We established two working groups; one for developing the electronic infrastructure and the other (comprising researchers, clinical experts and consumer representatives) for establishing the patient-centered program. Following agreement on the categories for the goal-setting menu, we drafted relevant messages to support and educate patients. These messages were then independently reviewed by multiple topic experts. Concurrently, we established an online database to capture participant characteristics and then integrated this database with a purpose-built messaging system. We conducted alpha testing of the approach using the first 60 messages. Results: The initial goal-setting menu comprised 26 subcategories. Following expert review, another 8 goal subcategories were added to the secondary prevention category: managing cholesterol; smoking; physical activity; alcohol consumption; weight management; medication management; access to health professionals, and self-care. Initially, 455 health messages were created by members of working group 2. Following refinement and mapping to different goals by the project team, 980 health messages across the health goals and 69 general motivational messages were formulated. Seventeen independent reviewers assessed the messages and suggested adding 73 messages and removing 16 (2%). Overall, 1,233 messages (18 administrative, 69 general motivation and 1,146 health-related) were created. Conclusion: This novel electronic self-management support system is ready to be pilot tested in a randomized controlled trial in patients with stroke. Keywords: stroke, e-health, self-management, health promotion, secondary prevention

Keywords

• stroke
• e-health
• self-management