{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,30]],"date-time":"2026-01-30T21:01:06Z","timestamp":1769806866397,"version":"3.49.0"},"reference-count":50,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2017,4,23]],"date-time":"2017-04-23T00:00:00Z","timestamp":1492905600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"Vinnova, Swedish Governmental Agency for Innovation Systems"},{"name":"FORTE, The Swedish Research Council for Health, Working Life and Welfare","award":["2014-4238"],"award-info":[{"award-number":["2014-4238"]}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Health Informatics J"],"published-print":{"date-parts":[[2019,3]]},"abstract":"<jats:p> Effective self-management is key to living well with Parkinson\u2019s disease and one important aspect is disease-specific knowledge. This article explores how people with Parkinson\u2019s disease in Sweden (1) acquire disease-specific knowledge and (2) use Parkinson\u2019s disease\u2013related healthcare. Data were collected through an online survey, which had 346 respondents (16\u201387\u2009years old, median age: 68\u2009years, 51% male; time since diagnosis: 0\u201331\u2009years, median time: 7\u2009years). Our results show that disease-specific knowledge is mainly found online, especially for women with Parkinson\u2019s disease and people with Parkinson\u2019s disease of working age, that most people with Parkinson\u2019s disease in Sweden see their neurologist for 1\u2009h or less per year and only one in two people with Parkinson\u2019s disease has regular contact with other Parkinson\u2019s disease\u2013related healthcare professionals. We also find that people with Parkinson\u2019s disease reporting higher levels of specific knowledge also are more likely to be satisfied with the amount of time they get with their neurologist, regardless of the amount of time. <\/jats:p>","DOI":"10.1177\/1460458217704248","type":"journal-article","created":{"date-parts":[[2017,4,24]],"date-time":"2017-04-24T04:39:20Z","timestamp":1493008760000},"page":"91-105","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":30,"title":["Patients are doing it for themselves: A survey on disease-specific knowledge acquisition among people with Parkinson\u2019s disease in Sweden"],"prefix":"10.1177","volume":"25","author":[{"given":"Sara","family":"Riggare","sequence":"first","affiliation":[{"name":"Karolinska Institutet, Sweden"}]},{"given":"P\u00e4r J","family":"H\u00f6glund","sequence":"additional","affiliation":[{"name":"J\u00f6nk\u00f6ping University, Sweden"}]},{"given":"Helena","family":"Hvitfeldt Forsberg","sequence":"additional","affiliation":[]},{"given":"Elena","family":"Eftimovska","sequence":"additional","affiliation":[]},{"given":"Per","family":"Svenningsson","sequence":"additional","affiliation":[]},{"given":"Maria","family":"H\u00e4gglund","sequence":"additional","affiliation":[{"name":"Karolinska Institutet, Sweden"}]}],"member":"179","published-online":{"date-parts":[[2017,4,23]]},"reference":[{"key":"bibr1-1460458217704248","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(09)60492-X"},{"key":"bibr2-1460458217704248","doi-asserted-by":"publisher","DOI":"10.3928\/00989134-20090201-10"},{"key":"bibr3-1460458217704248","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000310812.43352.66"},{"key":"bibr4-1460458217704248","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0404.2011.01517.x"},{"key":"bibr5-1460458217704248","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000247740.47667.03"},{"key":"bibr6-1460458217704248","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2009.10.006"},{"key":"bibr7-1460458217704248","doi-asserted-by":"publisher","DOI":"10.1207\/S15324796ABM2601_01"},{"key":"bibr8-1460458217704248","doi-asserted-by":"publisher","DOI":"10.1177\/1460458212445500"},{"key":"bibr9-1460458217704248","unstructured":"Fox S, Purcell K. 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