A report published in the open-access journal PLOS Med by researchers at the Institute of Health and Wellbeing says care provision for stroke needs to be transformed so that the needs of patients rather than the needs of health-care systems are prioritised.
Professor Frances Mair, who led the study, said: “Treatment for, and rehabilitation from, stroke is a lengthy process that requires considerable personal investment from the patient.
“The treatment burden of self-care practices the patients must perform to follow the complicated management strategies that have been developed for this condition can often be overwhelming.
“Patients may not be able to deal with the multiple demands placed on them by healthcare providers and systems for self-care, which leads to poor adherence to therapies and thus poor outcomes.”
The researchers analysed data in 69 qualitative studies dealing with the experience of stroke management and identified four main areas of treatment burden:
Moreover, they identified problems in all these areas, including inadequate provision of information, poor communication with healthcare providers and unsatisfactory in-patient care.
Prof Mair added: “These findings show that stroke management is extremely demanding for patients and is influenced by both the micro and macro organization of health services.
“Further work is required, however, to understand how the patient experience of treatment burden is affected by the clinical characteristics of stroke, by disability level, and by other co-existing diseases. By undertaking such work, it should be possible to generate a patient-reported outcome measure of treatment burden that, if used by policy makers and health-care providers, has the potential to improve the quality of stroke care.”