Patients are doing it for themselves: A survey on disease

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