Participation after stroke: Towards personalized care

Abstract

Stroke is one of the leading causes of death and disability worldwide. The incidence of stroke and the post-stroke survival rates have increased over the last decades, resulting in more people that have to deal with the long term consequences of stroke, such as physical, emotional, and cognitive problems, causing considerable long term restrictions in social and community participation and poorer Health-Related Quality of Life (HRQoL). The general aim of this Thesis is to gain a better understanding of participation after stroke by answering the following research questions: How should we measure participation and HRQoL after stroke? What is the course of participation over time after stroke? What are the determinants of participation after stroke? The first part of the Thesis focusses on the validation of and comparison between commonly used patient-reported outcome measures (PROMs) in the participation and HRQoL domains after stroke. Measurement properties of the USER-P-R, EQ-5D-5L and PROMIS-10 are discussed, and recommendations are given on the preferred PROM to evaluate participation and HRQoL after stroke depending on the setting and underlying goal. Overall, the results show the additional value of PROMs to evaluate participation and HRQoL post-stroke, providing clinicians with relevant person-centered information on the impact of stroke. The second part of this Thesis provides valuable insights into the long term course of participation after stroke and explores the influence of several potential factors on participation, including age-specific predictors, mood, psychological factors, cognitive functioning and movement behavior. The findings of this Thesis emphasize the need to pay more attention to individuals with stroke who experience restrictions in participation or who are at risk for restrictions in participation. Although recent developments in the acute treatment of stroke (such as intravenous thrombolysis and mechanical thrombectomy) have led to higher rates of “favorable functional outcome” (often defined as modified Rankin Scale 0-2 in clinical stroke trials), a considerable number of these “mildly affected” individuals with stroke (according to the clinician) still experiences long term restrictions in participation. This shows the need for a paradigm shift in current stroke research and clinical practice, as the impact of stroke on the individual needs to be acknowledged in order to achieve “favorable outcome” according to the individual as well. Although participation improves on average up to one year after stroke onset, many individuals experience long term restrictions in participation. Old age, mood problems, the absence of adaptive psychological factors, cognitive problems and a sedentary and inactive lifestyle are determinants associated with worse participation after stroke. Early identification of individuals with stroke who are at risk for an unfavorable course of participation is important, as modifiable factors can be managed and follow-up assessments after stroke can be extended for those at risk for restrictions in participation. Regular assessment of participation after stroke (in post-stroke care, stroke audits and stroke research), taking into account the impact of stroke from the patients’ perspective, would be a major step towards personalized stroke care.