Patients are doing it for themselves: A survey on disease-specific knowledge acquisition among people with Parkinson’s disease in Sweden

Abstract

Effective self-management is key to living well with Parkinson's disease and one important aspect is diseasespecific knowledge. This article explores how people with Parkinson's disease in Sweden (1) acquire diseasespecific 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.

Feeling controlled or being in control? Apps for self-management among older people with neurological disability

“…Having the opportunity to participate in and make informed decisions regarding one's care is another aspect they argue are important to autonomous successful ageing. This is in agreement with other literature, for instance described by Riggare [5] and van der Eijk [6]. In the last decade, person-centred care [28] has influenced health care services in Sweden, involving the patient as a partner in all aspects of care.…”

“…This is especially important since people today live longer, and the number of people living with a neurological disability is expected to increase. In turn, this can put greater demands on health care services [4], and at the same time, many are also interested in taking a larger responsibility for their health [5,6], and to make informed decisions regarding their health care.…”

“…For people with diabetes, cancer and for older adults with chronic diseases the use of apps has proven to facilitate selfmanagement by improving symptom management, increased knowledge and facilitating informed decisions [15,17]. However, few studies on mHealth and self-management focus on people with neurological disabilities [18] even though a majority of people with neurological disabilities use modern communication technology on a regular basis [5,19]. In a previous study [20], we found that people with a neurological disability use apps for e-mail, finding information, social media and physical and mental exercises.…”

Deep Phenotyping of Parkinson’s Disease

“…Today, the principal means for assessing PD are categorical, episodic assessments conducted in the clinic [ 8 ]. The 99.9% of the time during which individuals with PD are not directly observed by clinicians, until recently, has not been assessed [ 9, 10 ]. Diaries completed by patients concerning their response to medications provide a window into how individuals are affected by the disease in their natural environment, have helped evaluate the benefits of new treatments, and have been the basis for new approvals [ 11–13 ].…”

Six countries, six individuals: resourceful patients navigating medical records in Australia, Canada, Chile, Japan, Sweden and the USA

“…In a recent survey, 68% of Swedish respondents with Parkinson’s disease saw their neurologist for an hour or less annually. 6 …”