Post-stroke fatigue: an exploratory study with patients and health professionals to develop a patient-reported outcome measure

BACKGROUND: Post-stroke fatigue (PSF) is commonly reported and described as disabling by patients recovering from stroke. However, a major challenge is how to accurately diagnose and assess PSF. Therefore, the aim of this study was to explore PSF as it is experienced by stroke survivors and described by health professionals to guide future development of a PSF-specific PROM. METHODS: Individual semi-structured interviews were conducted with stroke survivors experiencing PSF (n = 9) and three focus groups were conducted with health professionals (n = 16). Data were analyzed through inductive content analysis. RESULTS: The analysis revealed four themes illustrating the experience and descriptions of PSF: 1) PSF characteristics, 2) interfering and aggravating factors, 3) management, and 4) PSF awareness, which refers to stroke survivors first becoming aware of PSF after their initial hospital admission. CONCLUSION: This study highlights the complexity and multidimensionality of PSF. The results from this study will guide future development of a PSF-PROM and support its content validity. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41687-021-00307-z.