Surprising results are delivered by a scientific pilot project, which was carried out by stroke patients themselves: What the medical classification only defines as a “light” stroke is perceived by many patients as a quite severe limitation in their daily life.
As part of the VASCage research project ACTpatient, stroke patients and their relatives designed questionnaires on the topics of aftercare and clinical research. They then provided these to 75 other patients. These were people who had suffered a stroke a year ago and whose condition was assessed as good, i.e. only slightly limited, according to the usual medical classification. The results of the survey are now available. They show that many of those affected and their families feel a heavy burden.
For example, about one third of the respondents said they could not accept the consequences of the stroke. The reasons they gave were that they could no longer do what they used to before the stroke and that they “want their old life back”. They feel that independence, work, social life and “having hope” are particularly affected. Three quarters are supported by partners or children in their daily life at home, a quarter of the respondents would have needed more support, one in ten missed information on reintegration at home.
ACTpatient advisory board member Karin Flatz, whose father had a stroke, reports: “The questionnaire was created by stroke patients and their relatives. It makes a big difference whether the right questions are asked and whether they are formulated in an understandable way. I think it’s very important that we affected people can participate ourselves and get the feeling of being heard.” And Prof. Michael Knoflach, clinical stroke researcher at VASCage and head of the stroke division at the Medical University of Innsbruck, sums up: “These results are quite astonishing when you consider that they come from those who have actually come out of treatment well.” He adds: “VASCage is conducting numerous clinical studies, including the Stroke Card Registry study with more than 1200 patients currently enrolled in post-stroke care. ACTpatient gives us important impulses for even further improved aftercare, especially by supporting the relatives.”
ACTpatient is being conducted by VASCage as a pilot project and is funded by the Open Innovation in Science Center of the Ludwig Boltzmann Society. “From the project we have learned how to design the process in a meaningful way so that patients can participate in clinical research in a more participatory way,” says project leader Eva Nachtschatt. The ACTpatient advisory board, consisting of patients, relatives and doctors, has now set itself the task of developing comprehensible consent forms and creating an explanatory video.
Link to press release (german)
Picture 1 (download): Patient-developed questionnaires ask the crucial questions and are easier to understand.
Picture 2 (download): The medical examination of bodily functions often paints a too positive picture of a person’s condition.
