Post-Stroke Fatigue is a common and debilitating condition affecting stroke survivors’ quality of life, rehabilitation outcomes, mood and life expectancy. There is no widely accepted evidence-based method of assessment, measurement or management of fatigue. Improved knowledge of both stroke survivor and health care practitioner perspectives on post-stroke fatigue could inform care pathways. This thesis addresses four research questions 1) How is post-stroke fatigue perceived? 2) What are the psychometric properties of current fatigue measurement scales? 3) How do healthcare practitioners assess post-stroke fatigue? 4) How is post-stroke fatigue managed?

These four questions were answered through five studies. Study 1. A systematic search and literature review of validity, reliability, and acceptability of fatigue specific scales. Study 2. Thematic analysis of archived posts on the Stroke Association hosted forum TalkStroke. Study 3. Thematic analysis of semi-structured interviews with 25 stroke survivors and supporters investigating the lived experience of post-stroke fatigue. Study 4. An online survey of 137 stroke rehabilitation therapists. Study 5. Framework analysis of 2 focus groups with healthcare practitioners exploring post-stroke fatigue care pathways.

Study 1. Many outcome measures have been developed for fatigue in chronic conditions, however there is still no gold standard outcome measure for post-stroke fatigue when considering psychometric properties. Study 2. Six themes were generated, encapsulating forum users perception that fatigue is a legitimate symptom of stroke which can be coped with and conceptualised in a variety of ways. Study 3. The unpredictable and variable nature of fatigue is distressing and acts as a barrier to routine, roles and personal aspirations. Study 4. Therapists use a variety of assessment and management strategies in clinical practice, predominantly focused on self-management. Notable variation was found between respondents’ definitions and characterisations of post-stroke fatigue. Study 5. Approaches to assessment and management varied by profession and setting, often led by one perceived specialist within the clinical team. The resulting lack of standardised approach may affect continuity of care.

Stroke survivors, their supporters and healthcare practitioners find understanding and explaining post-stroke fatigue challenging due to its variable and multi-faceted presentation. Perhaps as a result of its subjective nature, no measurement scales used in a stroke population have been found to have optimal psychometric properties. In the clinical setting, measurement tools are often used as an addition to extensive subjective assessment to enable the healthcare practitioner to assess the impact of fatigue. Management strategies vary dependent on profession and setting, leading to unstandardised care pathways and information provision.