Exploring post-stroke fatigue from the perspective of stroke survivors: what strategies help? A qualitative study.

PURPOSE: Post-stroke fatigue is a research priority for stroke survivors and health professionals but there is limited evidence to guide management. We aimed to explore (1) the experience of post-stroke fatigue from the perspective of stroke survivors and their caregivers and (2) fatigue management strategies that are used. MATERIALS AND METHODS: This was a qualitative study using semi-structured interviews. People with self-reported post-stroke fatigue and caregivers were recruited using maximum variation sampling. Analysis was done via the framework approach. RESULTS: We recruited 17 stroke survivors, nine male (53%), most under 65 years (n = 12, 76%), and greater than 1-year post-stroke (n = 16, 94%, range 10-months to 22-years). One-third of participants self-reported having aphasia (n = 5, 36%). We also recruited eight caregivers, most of whom were female (n = 7, 88%). We identified four themes: (1) fatigue is unexpected after stroke and symptoms vary; (2) the individual experience of fatigue is complex, influenced by multifactorial and biopsychosocial factors; (3) learning to adapt and accept fatigue; and (4) Strategies to manage fatigue and personal approaches to rest. CONCLUSIONS: Post-stroke fatigue experience varies presenting cognitively, physically, and psychologically according to a complex interplay of biopsychosocial factors and personal triggers. Self-management strategies are individualised and include organisation, medications, lifestyle modifications, and peer support.Implications for rehabilitationPost-stroke fatigue is a complex individual experience involving biopsychosocial factors, and stroke survivors need assistance to identify their triggers and support from family, peers, and the stroke community to live well with fatigue.Fatigue is not commonly discussed by health professionals and stroke survivors need simple, practical advice over the long-term to reduce fear and distress.There are a range of strategies that may be helpful. Stroke survivors may benefit from adopting problem-solving approaches, trial pacing, lifestyle modifications and planning, and find forms of rest that work for them.

Methods for living guidelines: early guidance based on practical experience. Paper 2: consumer engagement in living guidelines.

OBJECTIVES: To describe and reflect on the consumer engagement approaches used in five living guidelines from the perspectives of consumers (i.e., patients, carers, the public, and their representatives) and guideline developers. STUDY DESIGN AND SETTING: In a descriptive report, we used a template to capture engagement approaches and the experiences of consumers and guideline developers in living guidelines in Australia and the United Kingdom. Responses were summarized using descriptive synthesis. RESULTS: One guideline used a Consumer Panel, three included two to three consumers in the guideline development group, and one did both. Much of our experience was common to all guidelines (e.g., consumers felt welcomed but that their role initially lacked clarity). We identified six challenges and opportunities specific to living guidelines: managing the flow of work; managing engagement in online environments; managing membership of the panel; facilitating more flexibility, variety and depth in engagement; recruiting for specific skills-although these can be built over time; developing living processes to improve; and adapting consumer engagement together. CONCLUSION: Consumer engagement in living guidelines should follow established principles of consumer engagement in guidelines. Conceiving the engagement as living, underpinned by a living process evaluation, allows the approach to be developed with consumers over time.

Management of post-stroke fatigue: an Australian health professional survey.

PURPOSE: Evidence for post-stroke fatigue management is limited. We aimed to explore how Australian health professionals assess and assist fatigue management. Our objectives were to identify fatigue assessment tools and interventions used, explore clinician's confidence managing fatigue and explore whether management of post-stroke fatigue differs from management of fatigue related to other conditions. MATERIALS AND METHODS: An online cross-sectional survey was completed by Australian health professionals (n = 60) providing services to people with fatigue. Analysis of open-ended questions identified common interventions and descriptive statistics were calculated for closed and dichotomized questions. RESULTS: Routine use of formal fatigue assessment tools was low (17%, n = 10). Most respondents reporting use of the Fatigue Impact Scale, Fatigue Assessment Scale and Fatigue Severity Scale. To address fatigue, respondents reported providing energy optimization strategies, education, and exercise interventions in clinical practice. Less frequently reported interventions were strategies to adapt tasks, sleep hygiene, psychology, nutrition, and pharmacology interventions. Respondents were "moderately" confident managing post-stroke fatigue. Respondents did not report differences between how they manage post-stroke fatigue and fatigue present in other conditions. CONCLUSIONS: Few Australian health professionals formally assess post-stroke fatigue. Management is multidisciplinary and based on evidence from fatigue management in other conditions.Implications for rehabilitationMost health professionals are not routinely using formal assessment tools for fatigue, possibly due to a lack of consensus on best practice in research.Common strategies recommended by health professionals include energy optimisation strategies, education and exercise.Comprehensive guidelines for post-stroke fatigue management are yet to be established.Health professionals should assess post-stroke fatigue using a validated tool to ensure an individualised approach to management based on the current available clinical guidelines.

Exploring interactions of endocrine-disrupting compounds with different conformations of the human estrogen receptor alpha ligand binding domain: a molecular docking study.

Endocrine-disrupting compounds (EDCs) accumulating in nature are known to interact with nuclear receptors. Especially important is the human estrogen receptor alpha (hERalpha), and several EDCs are either known or suspected to influence the activity of the ligand-binding domain (LBD). We here present a comparative docking study of both well-known hERalpha ligands and small organic compounds, including selected polychlorinated biphenyls (PCBs), plasticizers, and pesticides, that are all potentially endocrine-disrupting,into different conformations of the hERalpha LBD. Three newly found quasi-stable structures of the hERalhpa LBD are examined along with three crystallographic conformations of the protein, either theapo structure or using a protein structure with a bound agonist or antagonist ligand. The possible interactions between the protein and the potentially EDCs are described. It is found that most suspected EDCs can bind in the steroid binding cavity, interacting with at least one of the two hydrophilic ends of the steroid binding site. DDE, DDT, and HPTE are predicted to bind most strongly to the hERalpha LBD. It is predicted that these compounds can interact with the three conformations of hERalpha LBD with comparable affinities.The metabolic hydroxylation of aromatic compounds is found to lead to an increase in the binding affinity of PCBs as well as DDT. Docking into the quasi-stable conformations of the hERalpha LBD leads to computed binding affinities similar to or better than those calculated for the three X-ray structures, revealing that the new structures may be of importance for assessing the function of the influence of EDCs on nuclear receptors.