An Online Self-Assessment Platform for Community-Dwelling Stroke Survivors: Development and Acceptability
Background: Activity limitation and participation restriction are common in stroke survivors. Digital health technologies are widely utilised to enable self-management. An online platform, specifically developed for stroke survivors can improve the use of electronic Patient-Reported Outcome Measures (ePROM) to enable self-assessment and empower patients to get involved in their care. The overall aim of this PhD was to develop and test the acceptability of an online self-assessment platform, the Stroke Survivors Hub (SSHUB) to support the long-term self-management of stroke survivors. Methods: A systematic review was conducted to explore existing disease-specific PROM to assess daily activity limitations in stroke survivors. This informed the development of the Evaluation of Daily Activity Questionnaire for stroke survivors (EDAQ-SS) with the involvement of 10 stroke survivors and 11 experts. Content validity of the EDAQ-SS was evaluated using the International Classification of Functioning (ICF) Core Set for Stroke. Following this, the EDAQ-SS was digitised as an ePROM and the SSHUB was developed. The SSHUB acceptability was tested with stroke survivors (n=57). Additionally, data collected via the eEDAQ-SS were used to explore patterns of activity limitation and participation restriction in British stroke survivors.Findings: The EDAQ-SS is an appropriate, comprehensive, understandable and relevant PROM to assess the extent of activity limitation and participation restriction in British stroke survivors, and the first stroke specific PROM to differentiate between capacity and performance. The SSHUB is a user-friendly and acceptable online platform to aid self-assessment of stroke survivors’ ability to carry our daily activities and aggregated data provide opportunities to examine the frequency and pattern of these difficulties in community-dwelling stroke-survivors. Conclusion: The EDAQ-SS is an acceptable measure of daily activities for stroke survivors, and freely available on the SSHUB to inform self-management. Future recommendations include the psychometric testing of the EDAQ-SS with a larger sample to establish the measurement validity and reliability, and the strategies to expand the remit of the SSHUB as an online self-management platform.
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