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Patients are doing it for themselves: A survey on disease-specific knowledge acquisition among people with Parkinson’s disease in Sweden
Karolinska Institutet, Sweden.
Jönköping University.
Karolinska Institutet, Sweden.
Karolinska Institutet, Sweden.
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2019 (English)In: Health Informatics Journal, ISSN 1460-4582, E-ISSN 1741-2811, Vol. 25, no 1, p. 91-105Article in journal (Refereed) Published
Abstract [en]

Effective self-management is key to living well with Parkinson’s disease and one important aspect is disease-specific knowledge. This article explores how people with Parkinson’s disease in Sweden (1) acquire disease-specific knowledge and (2) use Parkinson’s disease–related healthcare. Data were collected through an online survey, which had 346 respondents (16–87 years old, median age: 68 years, 51% male; time since diagnosis: 0–31 years, median time: 7 years). Our results show that disease-specific knowledge is mainly found online, especially for women with Parkinson’s disease and people with Parkinson’s disease of working age, that most people with Parkinson’s disease in Sweden see their neurologist for 1 h or less per year and only one in two people with Parkinson’s disease has regular contact with other Parkinson’s disease–related healthcare professionals. We also find that people with Parkinson’s 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. 

Place, publisher, year, edition, pages
Sage Publications, 2019. Vol. 25, no 1, p. 91-105
Keywords [en]
disease-specific knowledge, health information seeking, online survey, Parkinson, self-management
National Category
Neurology
Identifiers
URN: urn:nbn:se:hj:diva-43341DOI: 10.1177/1460458217704248ISI: 000458864000009PubMedID: 28434277Scopus ID: 2-s2.0-85061624367OAI: oai:DiVA.org:hj-43341DiVA, id: diva2:1296063
Available from: 2019-03-13 Created: 2019-03-13 Last updated: 2019-03-13Bibliographically approved

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CiteExportLink to record
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Citation style
  • apa
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