This thesis describes the wide range of long-term consequences in stroke patients who received multidisciplinary rehabilitation.Over a third of them reported pain in the shoulder, arm, wrist or... Show moreThis thesis describes the wide range of long-term consequences in stroke patients who received multidisciplinary rehabilitation.Over a third of them reported pain in the shoulder, arm, wrist or hand. About the same percentage had low patient activation scores, which is a prerequisite for effective self-management to cope with the consequences of stroke. Almost half of patients who were working before the stroke managed to maintain paid employment for two and a half years. These patients were more satisfied with their participation than patients who did not return to work. Average independence in daily activities increased during rehabilitation. The Barthel Index was found to be more sensitive to measure change than the Utrecht Scale for Evaluation of Rehabilitation. Health-related quality of life increased on average from start of rehabilitation to one year afterwards. The average social costs in the first year were €63,045 for inpatients and €24,533 for outpatients. The burden of the nearest of stroke patients was investigated, which showed that a third of them experienced a high burden.In conclusion, the consequences of stroke can also remain present, worsen or develop in the long term and are present for the individual patient, their nearest and the healthcare system. Show less
Background: Reporting individual clinical and patient-reported outcomes to patients during consultations may add to patients' disease knowledge and activation and stimulate Shared Decision Making ... Show moreBackground: Reporting individual clinical and patient-reported outcomes to patients during consultations may add to patients' disease knowledge and activation and stimulate Shared Decision Making (SDM). These outcomes can be presented over time in a clear way by the means of dashboarding. We aimed to systematically develop a Chronic Kidney Disease (CKD) dashboard designed to support consultations, test its usability and explore conditions for optimal use in practice. Methods: For development a participatory approach with patients and healthcare professionals (HCPs) from three hospitals was used. Working groups and patient focus groups were conducted to identify needs and inform the dashboard's design. Usability was tested in patient interviews. A focus group with HCPs was held to identify conditions for optimal use of the dashboard in daily practice. Results: A dashboard was developed for CKD patients stage 3b-4 visualizing both clinical and patient-reported outcomes over time for use during consultations and accessible for patients at home. Both HCPs and patients indicated that the dashboard can: motivate patients in their treatment by providing feedback on outcomes over time; improve consultation conversations by enhanced preparation of both HCPs and patients; better inform patients, thereby facilitating shared decision making. HCPs and patients both stated that setting a topic agenda for the consultation together is important in effectively discussing the dashboard during consultations. Moreover, the dashboard should not dominate the conversation. Lastly, findings of the usability tests provided design requirements for optimal user-friendliness and clarity. Conclusions: Dashboarding can be a valuable way of reporting individual outcome information to patients and their clinicians as findings suggest it may stimulate patient activation and facilitate decision making. Co-creation with patients and HCPs was essential for successful development of the dashboard. Gained knowledge from the co-creation process can inform others wishing to develop similar digital tools for use in clinical practice. Show less
