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Background: There is an increasing amount of research that investigates the needs and wishes of people with aphasia and their relatives with regards to improving the accessibility of communication with healthcare professionals (HCP). An important way to improve this is by training HCP to use supportive conversation techniques and tools. Objectives: This study aimed to inform the development of such a training, by adding to previous findings in the literature regarding the experiences, needs and wishes of people with aphasia and their relatives. We were interested in their experiences with the accessibility of communication and support from HCP and how they believed this can be improved. Methods: An exploratory qualitative research design was chosen. Data was collected through qualitative semi-structured interviews with 20 people with aphasia and 12 relatives. The time post stroke ranged from 3 months to 41 years. Results: Four themes described the data. According to people with aphasia and relatives (1) information transfer in healthcare settings and (2) the use of supported conversation techniques by HCP are inadequate, (3) there is a lack of shared decision-making in healthcare settings, and (4) support, guidance, counseling and education is mainly targeted at the person with aphasia. Conclusions: People with aphasia and relatives reported a variety of positive and negative experiences in all themes. Even though guidelines and interventions have been developed to improve healthcare for people with aphasia and their relatives, we found that people still encounter substantial challenges in access to- and provision of information, shared decision-making, support and communication with HCP. The findings in this study provide some important recommendations for improvement, including the improvement of transfer of information, shared decision-making and individual support for the relatives.

(1) Background: This study aimed to investigate two-year societal costs and generic health-related quality of life (QoL) using a bottom-up approach for the Restore4Stroke Cohort. (2) Methods: Adult post-stroke patients were recruited from stroke units throughout the Netherlands. The societal costs were calculated for healthcare and non-healthcare costs in the first two years after stroke. The QoL was measured using EQ-5D-3L. The differences between (sub)groups over time were investigated using a non-parametric bootstrapping method. (3) Results: A total of 344 post-stroke patients were included. The total two-year societal costs of a post-stroke were EUR 47,502 (standard deviation (SD = EUR 2628)). The healthcare costs decreased by two thirds in the second year −EUR 14,277 (95% confidence interval −EUR 17,319, −EUR 11,236). In the second year, over 50% of the total societal costs were connected to non-healthcare costs (such as informal care, paid help, and the inability to perform unpaid labor). Sensitivity analyses confirmed the importance of including non-healthcare costs for long-term follow-up. The subgroup analyses showed that patients who did not return home after discharge, and those with moderate to severe stroke symptoms, incurred significantly more costs compared to patients who went directly home and those who reported fewer symptoms. QoL was stable over time except for the stroke patients over 75 years of age, where a significant and clinically meaningful decrease in QoL over time was observed. (4) Conclusions: The non-healthcare costs have a substantial impact on the first- and second-year total societal costs post-stroke. Therefore, to obtain a complete picture of all the relevant costs related to a stroke, a societal perspective with a follow-up of at least two years is highly recommended. Additionally, more research is needed to investigate the decline in QoL found in stroke patients above the age of 75 years.

PURPOSE: To identify trajectories of physical and psychosocial health-related quality of life (HRQoL) from two months to one-year post stroke and to determine the factors that are associated with trajectory membership.METHOD: Multicenter prospective cohort study in which 351 stroke patients were followed up at 2, 6, and 12 months post stroke. Latent class growth mixture modeling was used to determine trajectories of physical and psychosocial HRQoL. Multinomial regression analyses were performed to predict trajectory membership. Potential predictors were demographic, stroke-related, and psychological factors.RESULTS: Four trajectories were identified for both physical and psychosocial HRQoL: high, low, recovery, and decline. Comparing the low and recovery trajectories, the groups with low HRQoL were more likely to have higher scores for neuroticism. Comparison of the decline and high trajectories yielded the following predictors of physical HRQoL: discharged to a rehabilitation setting, less acceptance and more neuroticism, pessimism, helplessness, and passive coping. Predictors of psychosocial HRQoL were: discharged to a rehabilitation setting, less self-efficacy, and proactive coping, and more helplessness and passive coping.CONCLUSIONS: The present study identified four distinct trajectories of physical and psychosocial HRQoL. The findings indicate that psychological factors are the most important factors in identifying stroke patients at risk of unfavorable HRQoL trajectories. Using these factors will help to identify vulnerable patients and guide rehabilitation in the early stages post stroke. Implications for rehabilitation Clinicians should be aware that health-related quality of life follows distinct trajectories stable high, stable low, recovery, or decline, after onset of stroke. Determining relevant psychological factors, in particular helplessness and passive coping, in stroke patients early after stroke is important because these