Patients who have experienced a stroke spend a substantial amount of time and effort seeking out, processing, and reflecting on information about the management of their condition because the information provided by health services worldwide is currently inadequate, according to a study by UK and US researchers published in this week’s PLOS Medicine.
Fragmented care and poor communication between stroke patients and clinicians, as well as between health-care providers, can mean that patients are ill-equipped to organize their care and develop coping strategies, which makes it less likely that they will adhere to the prescribed management of their condition, say the authors.
The authors, led by Frances Mair from the University of Glasgow, conducted a systematic review of 69 published studies that reported on the experiences and views of stroke patients from around the world. They found that patients commonly expressed four main areas of difficulty in managing their stroke: making sense of stroke management and planning care; interacting with others, including health care professionals; following management strategies, including enduring institutional admissions and adjusting to life after stroke; and making decisions about self-care.
Furthermore, patients reported that they frequently encounter barriers to receiving information from health services as the provision of information is lacking, inadequate time is allocated to them, timing is inappropriate, or information is given in a form that is incomprehensible.
“Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services,” say the authors. “There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.”
“Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research”,
Gallacher K, Morrison D, Jani B, Macdonald S, May CR, et al. (2013)
PLoS Med. 10(6): e1001473. doi:10.1371/journal.pmed.1001473
Funding: This study was funded by the Chief Scientist Office http://www.cso.scot.nhs.uk/CAF/10/03. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing Interests: DTE is currently receiving federal funding from the U.S. National Institutes of Health (National Institute of Nursing Research) to conduct research on the burden of treatment concept. Grant number: 1R21NR012984-01A1. FSM and CRM have also received funding from the ESRC previously to help develop a NPT web enabled toolkit. All other authors have declared that no competing interests exist.