The treatment and rehabilitation burden on stroke patients is too great, according to researchers at the University of Glasgow.

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.

The study was led by Professor Frances Mair and Dr Katie Gallacher. Prof Mair 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: 

  • Making sense of stroke management and planning care,
  • Interacting with others, including healthcare professionals, family and other patients with stroke
  • Enacting management strategies,
  • Reflecting on management to make decisions about self-care.

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.

“At the micro organizational level, fragmented care and poor communication between patients and clinicians and between health-care providers can mean patients are ill equipped to organize their care and develop coping strategies, which makes adherence to management strategies less likely.

“At the macro organizational level, it can be hard for patients to obtain the practical and financial help they need to manage their stroke in the community.

“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.”

For more information contact Stuart Forsyth in the University of Glasgow Media Relations Office on 0141 330 4831 or email stuart.forsyth@glasgow.ac.uk

Notes to Editors

The paper ‘Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research’ is published in PLOS Med and can be found here: http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001473

 

First published: 25 June 2013

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