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

Abstract

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.

“I Give It Everything for an Hour Then I Sleep for Four.” The Experience of Post-stroke Fatigue During Outpatient Rehabilitation Including the Perspectives of Carers: A Qualitative Study

“…Some of our findings are consistent with prior studies that similarly found fatigue was complicated by its invisibility, and that stroke survivor and carers' lack of knowledge about fatigue contributed to difficulty coping, adding emotional distress ( 12 ). Individual qualitative studies have also reported stroke survivors feel restricted, frustrated ( 11 ), unprepared, and that fatigue is most noticeable soon after hospital discharge ( 37 , 38 ). The perceived benefits of pacing and physical activity have previously been described ( 10 , 12 , 14 , 37 – 40 ).…”

“…It was not always clear in other studies whether people were participating in rehabilition ( 12 ). In two recent studies investigating stroke and/or brain injury fatigue experience only 24–35% of participants were receiving outpatient rehabilitation ( 38 , 41 ). In our study stroke survivors used a range of strategies to optimize energy levels and adapt their rehabilitation schedule to their fatigue.…”

Effects of focus training on heart rate variability in post-stroke fatigue patients

“…Post stroke fatigue is complex and multidimensional, including emotional, cognitive, physical and social aspects. The accurate diagnosis of post-stroke fatigue and the auxiliary diagnosis suitable for instruments are still not ideal [ 21 ]. In addition, stroke patients may not be immediately aware of their fatigue, which are challenges we need to face.…”

The Effects of Vestibular Rehabilitation on Poststroke Fatigue: A Randomized Controlled Trial Study

“…Fatigue is a very common poststroke complication, with a prevalence of 16-74% [ 1 , 2 ], which is considered one of the symptoms of poststroke depression (PSD) [ 3 ]. However, the fact that patients without depression frequently complain of fatigue necessitates a study of “poststroke fatigue” (PSF) as a specific syndrome [ 4 ].…”