Development of an ecological momentary assessment of fatigue after ABI using sequential exploratory design
Background: It is estimated that between 21 -77% people with acquired brain injury (ABI) experience problematic and persistent fatigue. Many struggle to resume their previous levels of activity and participation. Yet the relationship between fatigue and participation is unclear. Current approaches to assessing the impact of fatigue on participation fail to capture the variability of fatigue experiences or to evaluate the efficacy of fatigue interventions. Aim: to develop and evaluate a smartphone ecological momentary assessment (smart EMA) of the impact of fatigue on participation in the context of daily situational factors. Methods: A user- centred design approach guided the development of the smart EMA app and was underpinned by the biopsychosocial approach to disability. The concepts underpinning the app were generated through a systematic review of participation after stroke and narrative reviews of participation after ABI, together with a qualitative descriptive study of fatigue experiences after ABI. Interviews were conducted with people with ABI and the transcripts were analysed using the Frameworks method. Initial prototypes of the smart EMA were developed collaboratively with app developers, and people with ABI. The EMA consisted of self -reports of activity, energy and a psychomotor vigilance test. The app was evaluated using an iterative user-centred approach with Occupational Therapists and people with ABI, through talk aloud interviews, field testing, qualitative interviews and the system usability scale. Results: The systematic review of 82 studies investigating participation outcomes after stroke revealed multiple associations between biopsychosocial factors and participation but fatigue was infrequently investigated. The narrative reviews revealed conflicting evidence of the interplay between fatigue and participation and the need for ecological momentary assessments (EMA) of fatigue was established. 16 people with ABI were recruited to the qualitative study. Four themes were derived through analysis of qualitative interviews: experiencing fatigue in the context of everyday activities, struggling to make sense of fatigue, coping with fatigue, adjusting social participation in the context of fatigue. A model was developed proposing that the impact of fatigue on participation is mediated by coping strategies. The app was positively rated by 7 study participants with ABI, with a mean S.U.S. score of 86. 233 EMA surveys were completed during field testing. Key usability problems were related to the method of alerting participants to complete a survey. Visual inspection of the EMA data suggested within-person variation in temporal patterns of energy, fatigue, and activity, as well as individual differences in fatigue-activity interactions. A short PVT was found to be feasible as an objective indicator of fatigue. Conclusions: these studies suggest coping and self-efficacy as intervention targets for mitigating the impact of fatigue on daily life. A smart EMA app to monitor fatigue and activity in ABI survivors is feasible, acceptable to users, and provides data about fatigue variability in the context of daily activities and environments. As such, the app has potential to ground the choice of selfmanagement strategies in empirical evidence.
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