{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,9]],"date-time":"2026-10-09T01:46:27Z","timestamp":1791510387958,"version":"4.3.4"},"reference-count":59,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,5,11]],"date-time":"2026-05-11T00:00:00Z","timestamp":1778457600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Neurol."],"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Advances in acute stroke management have increased the number of individuals living with long-term disabilities, presenting challenges in maintaining prior levels of participation in life situations. Return to active participation can be seen as the goal of rehabilitation, given its clear impact on patients\u2018 quality of life. In this study, we aimed to develop the Participation in Life Situations-Stroke (PILS-Stroke) questionnaire, a self-reported Rasch-built tool for measuring patients' social involvement in meaningful life situations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We assembled a 72-item experimental version of PILS-Stroke, which was grounded on patients' and experts' perspectives via an initial item content review followed by item relevance\/comprehensibility assessment. We then administered the questionnaire to 105 post-stroke individuals (58% males; mean \u00b1 SD: 62 \u00b1 14 years) discharged for at least one month from hospital. Participants rated their involvement in life situations using a 3-point scale (0: \u201cI would like to, but I don't get involved\u201d; 1: \u201cI get involved a little\u201d; 2: \u201cI get involved a lot\u201d; ?: \u201cI don't know\/I don't want to get involved\u201d). The responses were analyzed using the Rasch measurement model (RUMM2030+ software) to select the items presenting the best psychometric properties, resulting in an objective and unidimensional measurement tool. Construct validity was assessed using ten clinical measures covering International Classification of Functioning, Disability, and Health (ICF) domains (body functions, activities, participation).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      The final 38-item PILS-Stroke demonstrated good reliability [Person Separation Index (PSI) = 0.89] and defined a unidimensional and linear scale for measuring stroke patients' social participation. There was a high correlation between social participation with satisfaction regarding activities\/participation (SATIS-Stroke, r\n                      <jats:sub>s<\/jats:sub>\n                      = 0.7,\n                      <jats:italic>P<\/jats:italic>\n                      &amp;lt; 0.001) and weak-to-moderate correlation with performance of motor activities (ACTIVLIM-CS, ABILHAND-CS, ABILOCO-CS; 0.20 \u2264 r\n                      <jats:sub>s<\/jats:sub>\n                      \u2264 0.39,\n                      <jats:italic>P<\/jats:italic>\n                      &amp;lt; 0.049) and certain psychological indicators (depression [HADS], r\n                      <jats:sub>s<\/jats:sub>\n                      = \u22120.45,\n                      <jats:italic>P<\/jats:italic>\n                      &amp;lt; 0.001; confidence [CaSM], r\n                      <jats:sub>s<\/jats:sub>\n                      = 0.47,\n                      <jats:italic>P<\/jats:italic>\n                      &amp;lt; 0.001).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>PILS-Stroke is a valid and reliable unidimensional tool specifically developed to measure stroke patients' social involvement in life situations. Its psychometric properties show promising potential for monitoring patients' social participation and quantifying the effectiveness of rehabilitation programs promoting their social inclusion.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3389\/fneur.2026.1733609","type":"journal-article","created":{"date-parts":[[2026,5,11]],"date-time":"2026-05-11T04:23:52Z","timestamp":1778473432000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":1,"title":["\u201cHow involved do you feel?\u201d The PILS-Stroke questionnaire: a Rasch-built measure of social participation after stroke"],"prefix":"10.3389","volume":"17","author":[{"given":"Edouard","family":"Ducoffre","sequence":"first","affiliation":[{"name":"Motor Skill Learning and Intensive Neurorehabilitation Lab","place":["Institute of Neuroscience, UCLouvain, Belgium"]},{"name":"Forme & fonctionnement Humain (FfH) Unit","place":["CeREF-Sant\u00e9, Haute Ecole Louvain en Hainaut, Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yannick","family":"Bleyenheuft","sequence":"additional","affiliation":[{"name":"Motor Skill Learning and Intensive Neurorehabilitation Lab","place":["Institute of Neuroscience, UCLouvain, Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Massimo","family":"Penta","sequence":"additional","affiliation":[{"name":"Arsalis SRL","place":["Glabais, Belgium"]},{"name":"Institute of Neuroscience","place":["UCLouvain, Louvain-la-Neuve, Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Merlin","family":"Somville","sequence":"additional","affiliation":[{"name":"Motor Skill Learning and Intensive Neurorehabilitation Lab","place":["Institute of Neuroscience, UCLouvain, Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Z\u00e9lie","family":"Rosselli","sequence":"additional","affiliation":[{"name":"Motor Skill Learning and Intensive Neurorehabilitation Lab","place":["Institute of Neuroscience, UCLouvain, Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Geoffroy","family":"Saussez","sequence":"additional","affiliation":[{"name":"Motor Skill Learning and Intensive Neurorehabilitation Lab","place":["Institute of Neuroscience, UCLouvain, Belgium"]},{"name":"Forme & fonctionnement Humain (FfH) Unit","place":["CeREF-Sant\u00e9, Haute Ecole Louvain en Hainaut, Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yves","family":"Vandermeeren","sequence":"additional","affiliation":[{"name":"Stroke Unit\/Motor Learning Lab, Neurology Department, CHU UCL Namur, site Godinne, UCLouvain","place":["Yvoir, Belgium"]},{"name":"NEUR Department, Institute of Neuroscience, UCLouvain","place":["Brussels, Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carlyne","family":"Arnould","sequence":"additional","affiliation":[{"name":"Forme & fonctionnement Humain (FfH) Unit","place":["CeREF-Sant\u00e9, Haute Ecole Louvain en Hainaut, Belgium"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2026,5,11]]},"reference":[{"key":"B1","doi-asserted-by":"publisher","first-page":"2429","DOI":"10.1056\/NEJMoa1804492","article-title":"Global, Regional, and Country-Specific Lifetime Risks of Stroke, 1990 and 2016","volume":"379","author":"Feigin","year":"2018","journal-title":"N Engl J Med"},{"key":"B2","doi-asserted-by":"publisher","first-page":"795","DOI":"10.1016\/s1474-4422(21)00252-0","article-title":"Global, regional, and national burden of stroke and its risk factors, 1990\u20132019: a systematic analysis for the Global Burden of Disease Study 2019","volume":"20","author":"Feigin","year":"2021","journal-title":"Lancet Neurol"},{"key":"B3","doi-asserted-by":"publisher","first-page":"e2457447","DOI":"10.1001\/jamanetworkopen.2024.57447","article-title":"Prevalence, Trajectory, and factors associated with patient-reported nonmotor outcomes after stroke: a systematic review and meta-analysis","volume":"8","author":"Ozkan","year":"2025","journal-title":"JAMA Netw Open"},{"key":"B4","doi-asserted-by":"publisher","first-page":"509","DOI":"10.1136\/jnnp-2013-306203","article-title":"Trends in the incidence of ischaemic stroke in young adults between 1985 and 2011: the Dijon Stroke Registry","volume":"85","author":"B\u00e9jot","year":"2014","journal-title":"J Neurol Neurosurg Psychiatry"},{"key":"B5","doi-asserted-by":"publisher","first-page":"e431","DOI":"10.1161\/STROKEAHA.108.534487","article-title":"What are the social consequences of stroke for working-aged adults? 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