%0 Journal Article
%T Patients are doing it for themselves: A survey on disease
%A Elena Eftimovska
%A Helena Hvitfeldt Forsberg
%A Maria H£¿gglund
%A Per Svenningsson
%A P£¿r J H£¿glund
%A Sara Riggare
%J Health Informatics Journal
%@ 1741-2811
%D 2019
%R 10.1177/1460458217704248
%X 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¨Crelated healthcare. Data were collected through an online survey, which had 346 respondents (16¨C87£¿years old, median age: 68£¿years, 51% male; time since diagnosis: 0¨C31£¿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¨Crelated 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
%K disease-specific knowledge
%K health information seeking
%K online survey
%K Parkinson
%K self-management
%U https://journals.sagepub.com/doi/full/10.1177/1460458217704248