Exploring experiences of people with stroke and health professionals on post-stroke fatigue guidance: getting the right people to the right care at the right time.

PURPOSE: This focus group study aimed to explore experiences and perceptions on post-stroke fatigue guidance in Dutch rehabilitation and follow-up care among people/patients with stroke and health professionals. METHODS: Ten persons with stroke and twelve health professionals with different professions within stroke rehabilitation or follow-up care in the Netherlands were purposively sampled and included. Eight online focus group interviews were conducted. We analysed the data using reflexive thematic analysis. RESULTS: Three themes were identified. Guidance in fatigue management did not always match the needs of people/patients with stroke. Professionals were positive about the provided fatigue guidance (e.g. advice on activity pacing), but found it could be better tailored to the situation of people/patients with stroke. Professionals believe the right time for post-stroke fatigue guidance is when people/patients with stroke are motivated to change physical activity behaviour to manage fatigue - mostly several months after stroke - while people/patients with stroke preferred information on post-stroke fatigue well before discharge. Follow-up care and suggestions for improvement described that follow-up support after rehabilitation by a stroke coach is not implemented nationwide, while people/patients with stroke and professionals expressed a need for it. CONCLUSIONS: The study findings will help guide improvement of fatigue guidance in stroke rehabilitation programmes and stroke follow-up care aiming to improve physical activity, functioning, participation, and health.

We recommend fatigue guidance, including peer support, to be accessible to all people after stroke and for health professionals to pay attention to acceptance of the stroke.To improve fatigue guidance, we suggest providing information on post-stroke fatigue to people after stroke and their relatives well before discharge from stroke rehabilitation.Tailored advice on activity pacing during and after stroke rehabilitation is important to fill the current unmet need of people after stroke to manage fatigue and to gradually improve participation, physical activity behaviour and health.We recommend to health professionals working in stroke rehabilitation to tailor the rehabilitation schedule to their patients' energy level and perception of fatigue levels.

Trajectories of health-related quality of life among people with a physical disability and/or chronic disease during and after rehabilitation: a longitudinal cohort study.

PURPOSE: To identify Health-related Quality of Life (HR-QoL) trajectories in a large heterogeneous cohort of people with a physical disability and/or chronic disease during and after rehabilitation and to determine which factors before discharge are associated with longitudinal trajectory membership. METHODS: A total of 1100 people with a physical disability and/or chronic disease were included from the longitudinal cohort study Rehabilitation, Sports and Active lifestyle. All participants participated in a physical activity promotion programme in Dutch rehabilitation care. HR-QoL was assessed using the RAND-12 Health Status Inventory questionnaire at baseline (T0: 3-6 weeks before discharge) and at 14 (T1), 33 (T2) and 52 (T3) weeks after discharge from rehabilitation. A data-driven approach using Latent Class Growth Mixture modelling was used to determine HR-QoL trajectories. Multiple binomial multivariable logistic regression analyses were used to determine person-, disease- and lifestyle-related factors associated with trajectory membership. RESULTS: Three HR-QoL trajectories were identified: moderate (N = 635), high (N = 429) and recovery (N = 36). Trajectory membership was associated with person-related factors (age and body mass index), disease-related factors (perceived fatigue, perceived pain and acceptance of the disease) and one lifestyle-related factor (alcohol consumption) before discharge from rehabilitation. CONCLUSIONS: Most of the people who participated in a physical activity promotion programme obtained a relatively stable but moderate HR-QoL. The identified HR-QoL trajectories among our heterogeneous cohort are disease-overarching. Our findings suggest that people in rehabilitation may benefit from person-centred advice on management of fatigue and pain (e.g. activity pacing) and the acceptance of the disability.