Journal of Rehabilitation Medicine 51-9

J Rehabil Med 2019; 51: 660–664 ORIGINAL REPORT SELF-PERCEIVED IMPACT OF STROKE: A LONGITUDINAL COMPARISON BETWEEN ONE AND FIVE YEARS POST-STROKE Erik SKOGLUND, MD, Emma WESTERLIND, MD, Hanna C. PERSSON, PT, PhD and Katharina S. SUNNERHAGEN, MD, PhD From the Department of Clinical Neuroscience, Rehabilitation Medicine, Institute of Neuroscience and Physiology, Sahlgrenska, Academy, University of Gothenburg, Gothenburg, Sweden Objective: To investigate different aspects of self- perceived impact of stroke 1 and 5 years after stroke onset, with a focus on self-perceived participation. Design: Longitudinal cohort study. Participants: Forty-five persons diagnosed with first- time stroke included in the Stroke Arm Longitudinal study at University of Gothenburg (SALGOT). Methods: Participants responded to the Stroke Im- pact Scale, the Impact on Participation and Autono- my and the European Quality of Life 5 dimensions at 1 year and 5 years post-stroke. Wilcoxon signed- rank test was used to check for differences in chan- ges over time between groups. Results: In general, the perceived consequences of stroke were more severe after 5 years compared with at 1 year. Strength, emotion and participation were the areas most affected, along with restrictions in social life and autonomy indoors. Global disabi- lity (mRS) was moderately correlated with quality of life. Conclusion: The perceived impact of stroke becomes more prominent with time, even for persons with mild-to-moderate stroke. This study highlights the need for long-term support for persons with stroke. Key words: stroke; Stroke Impact Scale; longitudinal; par- ticipation. Accepted Aug 21, 2019; Epub ahead of print Sep 2, 2019 J Rehabil Med 2019; 51: 660–664 Correspondence address: Katharina S. Sunnerhagen, Department of Clinical Neuroscience, Rehabilitation Medicine, Institute of Neurosci- ence and Physiology, Sahlgrenska, Academy, University of Gothen- burg, Gothenburg, Sweden. E-mail: katharina.sunnerhagen@neuro. gu.se S troke is a major cause of death and disability world- wide. More than 10 million people are affected by stroke every year (1). The majority of persons with stro- ke survive and, globally at least, 25 million people live with the consequences of stroke (1). In Sweden stroke affects approximately 25,000 persons every year and is the most common cause of neurological disability (2). The consequences of stroke may impact various as- pects of a person’s life. For example, reduced ability to manage activities of daily living (ADL), participation in society, or return to work or social life (3). Participation is defined by the World Health Organization’s Internatio- nal Classification of Functioning, Disability and Health (ICF) as “involvement in life situation” (4). Previous LAY ABSTRACT Stroke is a major cause of death and disability world wide. Persons with stroke experience many types of con- sequences. This study investigated the self-perceived consequences of stroke at 1 and 5 years post-stroke. Forty-five people participated in face-to-face interviews at 1 year and responded to surveys via regular mail after 5 years. The results show that the perceived impact of stroke becomes more severe with time, even for per- sons with mild-to-moderate stroke. We conclude that persons with stroke are in need of continuous support. research has shown that persons with stroke experience restriction in participation even after 5 years (5). A review study based on interview studies (6) found that rehabilitation did not focus sufficiently on psychological support after stroke to reduce experienced loneliness, but rather placed too much focus on functional reha- bilitation (6). Some of the most frequent self-reported persisting consequences in a 10-year follow-up study were mobility, anxiety/depression, and pain/discomfort (7). The Stroke Impact Scale (SIS) is a questionnaire developed to evaluate not only the physical, but also other aspects important to how persons with stroke per- ceive their life after stroke (8). Most follow-up studies using SIS do not use it more than 1 year after stroke, but a Swedish study (9) investigated the self-perceived impact measured by the SIS after 6 years. The most positive clinical meaningful changes between 1 and 6 years were found in the domain participation. Those with moderate/severe stroke and older age experienced more negative clinically meaningful changes in different domains. However, even those that only had mild stroke still experienced consequences after 6 years (9). To our knowledge not many studies have investiga- ted the self-perceived impact of stroke using the same questionnaires and comparing them at 1 year and 5 years after stroke. The aim of the current study was to investigate different aspects of self-perceived impact of stroke 1 and 5 years after stroke onset, with a focus on participation. MATERIAL AND METHODS This longitudinal cohort study is based on data from the Stroke Arm Longitudinal study at University of Gothenburg This is an open access article under the CC BY-NC license. www.medicaljournals.se/jrm doi: 10.2340/16501977-2595 Journal Compilation © 2019 Foundation of Rehabilitation Information. ISSN 1650-1977

Journal of Rehabilitation Medicine 51-9 | Page 36