{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T02:05:55Z","timestamp":1787018755086,"version":"build-2736575974"},"reference-count":45,"publisher":"SAGE Publications","issue":"8","license":[{"start":{"date-parts":[[2011,10,31]],"date-time":"2011-10-31T00:00:00Z","timestamp":1320019200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat Med"],"published-print":{"date-parts":[[2012,12]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>The situation for people feeling severely affected by Multiple Sclerosis (MS) remains largely unexamined and the term \u2018severe MS\u2019 is not clearly defined.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim:<\/jats:title>\n                    <jats:p>Our study describes this sub-group of patients utilizing exclusively a subjective inclusion criterion to analyse their reasons for feeling severely affected and document their perceived unmet needs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>A questionnaire with open- and closed-ended items addressing only patients feeling severely affected was sent out nationwide. Expanded Disability Status Score (EDSS) and subjectively severe affectedness were analysed for correlation. After dichotomizing both scores by a median split, the answers were allocated to these groups and tested for significant differences.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting\/participants:<\/jats:title>\n                    <jats:p>1,110 questionnaires were analysed regarding the closed-ended questions while a subsample of 40% ( n = 445) was analysed regarding the open-ended questions. Average age of participants was 51.87 years. Average time since diagnosis was 16.6 years. Main course of the disease was secondary progressive (35.5%).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>The most frequently mentioned reasons for feeling severely affected were lack of mobility (56.4%) and fatigue (27.4%). Significant percentages for unmet needs were seen in the categories of funding services (31.0%), better social integration (24.7%) and medical support (25.2%). A significant correlation was observed between EDSS and subjectively felt affectedness ( p \u2264 0.01). Motor disorders explained differences in patient needs behind a higher EDSS score; higher severe affectedness referred to other issues like dependency and immobility.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>EDSS is insufficient for usage as the sole instrument for measuring severe affectedness as it does not take into account other potential reasons. Complex patient needs necessitate multi-professional care as offered by palliative medicine.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/0269216311425420","type":"journal-article","created":{"date-parts":[[2011,10,31]],"date-time":"2011-10-31T23:00:33Z","timestamp":1320102033000},"page":"1001-1010","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":30,"title":["Feeling severely affected by Multiple Sclerosis: What does this mean?"],"prefix":"10.1177","volume":"26","author":[{"given":"Julia","family":"Strupp","sequence":"first","affiliation":[{"name":"Department of Palliative Medicine, University Hospital Cologne, Cologne, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexander","family":"Hartwig","sequence":"additional","affiliation":[{"name":"Department of Palliative Medicine, University Hospital Cologne, Cologne, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heidrun","family":"Golla","sequence":"additional","affiliation":[{"name":"Department of Palliative Medicine, University Hospital Cologne, Cologne, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maren","family":"Galushko","sequence":"additional","affiliation":[{"name":"Department of Palliative Medicine, University Hospital Cologne, Cologne, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Holger","family":"Pfaff","sequence":"additional","affiliation":[{"name":"Institute for Medical Sociology, Health Services Research and Rehabilitation Science (IMHR), Cologne, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Raymond","family":"Voltz","sequence":"additional","affiliation":[{"name":"Department of Palliative Medicine, University Hospital Cologne, Cologne, Germany; Centre for Integrated Oncology Cologne\/Bonn (CIO), Germany; Clinical Trials Centre Cologne, Cologne, Germany (ZKS)"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2011,10,31]]},"reference":[{"key":"bibr1-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1177\/0269216307076333"},{"key":"bibr2-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1177\/0269215507075035"},{"key":"bibr3-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1177\/1352458506071789"},{"key":"bibr4-0269216311425420","doi-asserted-by":"publisher","DOI":"10.12968\/ijpn.2006.12.1.20392"},{"key":"bibr5-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1177\/0269216306075112"},{"key":"bibr6-0269216311425420","first-page":"96","author":"Galushko M","year":"2009","journal-title":"Eur J Palliat Care"},{"key":"bibr7-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1177\/082585970602200306"},{"key":"bibr8-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2007.04219.x"},{"key":"bibr9-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1191\/026921500669834306"},{"key":"bibr10-0269216311425420","first-page":"378","volume":"55","author":"MacLurg K","year":"2005","journal-title":"Br J Gen Pract"},{"key":"bibr11-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1258\/135581902760082454"},{"key":"bibr12-0269216311425420","first-page":"10","volume":"24","author":"Koopman W","year":"2003","journal-title":"Axone"},{"key":"bibr13-0269216311425420","doi-asserted-by":"crossref","unstructured":"Voltz R, Bernat JL, Borasio GD, Maddocks I, Oliver D, Portenoy RK (eds). Palliative care in neurology. Oxford: Oxford University Press, 2004, p.448","DOI":"10.1093\/oso\/9780198508434.001.0001"},{"key":"bibr14-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1093\/qjmed\/hch105"},{"key":"bibr15-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1177\/1352458506070775"},{"key":"bibr16-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.55.8.671"},{"key":"bibr17-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1037\/0022-006X.65.6.950"},{"key":"bibr18-0269216311425420","first-page":"442","volume":"1990","author":"Wade S","journal-title":"Read Teach"},{"key":"bibr19-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1016\/j.nedt.2003.10.001"},{"key":"bibr20-0269216311425420","first-page":"7","author":"Stemler S","year":"2001","journal-title":"Pract Assess Res Eval"},{"key":"bibr21-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1353\/lib.2006.0053"},{"key":"bibr22-0269216311425420","first-page":"113","volume":"105","author":"Flachenecker P","year":"2008","journal-title":"Dtsch Arztebl Int"},{"key":"bibr23-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1177\/1049732303257108"},{"key":"bibr24-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1177\/135245850000600308"},{"key":"bibr25-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1191\/1352458502ms839oa"},{"key":"bibr26-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1177\/135245850100700511"},{"key":"bibr27-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1191\/1352458503ms939oa"},{"key":"bibr28-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1212\/01.WNL.0000137047.85868.D6"},{"key":"bibr29-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1001\/archneur.60.8.1089"},{"key":"bibr30-0269216311425420","first-page":"3","volume":"48","author":"Alajbegovic A","year":"2009","journal-title":"Acta Clin Croat"},{"key":"bibr31-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1176\/appi.ajp.159.11.1862"},{"key":"bibr32-0269216311425420","first-page":"1127","volume":"39","author":"Teasell RW","year":"1993","journal-title":"Can Fam Physician"},{"key":"bibr33-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.38.11.1793"},{"key":"bibr34-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.65.4.460"},{"key":"bibr35-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1258\/135581902760082454"},{"key":"bibr36-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1037\/0003-066X.58.4.289"},{"key":"bibr37-0269216311425420","volume-title":"Applying the social model of disability to health and social care services","author":"GB Disability Training &amp; Consultancy","year":"2007"},{"key":"bibr38-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1002\/j.1556-6676.1989.tb01346.x"},{"key":"bibr39-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1037\/0090-5550.45.4.409"},{"key":"bibr40-0269216311425420","first-page":"3","volume":"75","author":"Smart JF","year":"2009","journal-title":"J Rehabil"},{"key":"bibr41-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1111\/j.1532-5415.2007.01610.x"},{"key":"bibr42-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1177\/1352458510367466"},{"key":"bibr43-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1177\/1352458510364632"},{"key":"bibr44-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1002\/1097-0142(20010815)92:4+<1049::AID-CNCR1418>3.0.CO;2-H"},{"key":"bibr45-0269216311425420","doi-asserted-by":"publisher","DOI":"10.1191\/1352458504ms1116rr"}],"container-title":["Palliative Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/0269216311425420","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/0269216311425420","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/0269216311425420","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T18:19:29Z","timestamp":1777659569000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/0269216311425420"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2011,10,31]]},"references-count":45,"journal-issue":{"issue":"8","published-print":{"date-parts":[[2012,12]]}},"alternative-id":["10.1177\/0269216311425420"],"URL":"https:\/\/doi.org\/10.1177\/0269216311425420","relation":{},"ISSN":["0269-2163","1477-030X"],"issn-type":[{"value":"0269-2163","type":"print"},{"value":"1477-030X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2011,10,31]]}}}