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Patient and public attitudes to and awareness of clinical practice guidelines: a systematic review with thematic and narrative syntheses

Kirsty Loudon et al. Patient and public attitudes to and awareness of clinical practice guidelines: a systematic review with thematic and narrative syntheses. BMC Health Services Research 2014, 14:321 doi:10.1186/1472-6963-14-321
Abstract / Summary: 
Background: Clinical practice guidelines are typically written for healthcare providers but there is increasing interest in producing versions for the public, patients and carers. The main objective of this review is to identify and synthesise evidence of the public's attitudes towards clinical practice guidelines and evidence-based recommendations written for providers or the public, together with their awareness of guidelines.   Methods: We included quantitative and qualitative studies of any design reporting on public, patient (and their carers) attitudes and awareness of guidelines written for providers or patients/public. We searched electronic databases including MEDLINE, PSYCHINFO, ERIC, ASSIA and the Cochrane Library from 2000 to 2012. We also searched relevant websites, reviewed citations and contacted experts in the field. At least two authors independently screened, abstracted data and assessed the quality of studies. We conducted a thematic analysis of first and second order themes and performed a separate narrative synthesis of patient and public awareness of guidelines.   Results: We reviewed 5415 records and included 26 studies (10 qualitative studies, 13 cross sectional and 3 randomised controlled trials) involving 24 887 individuals. Studies were mostly good to fair quality. The thematic analysis resulted in four overarching themes: Applicability of guidelines; Purpose of guidelines for patient; Purpose of guidelines for health care system and physician; and Properties of guidelines. Overall, participants had mixed attitudes towards guidelines; some participants found them empowering but many saw them as a way of rationing care. Patients were also concerned that the information may not apply to their own health care situations. Awareness of guidelines ranged from 0-79%, with greater awareness in participants surveyed on national guideline websites.   Conclusion: There are many factors, not only formatting, that may affect the uptake and use of guideline-derived material by the public. Producers need to make clear how the information is relevant to the reader and how it can be used to make healthcare improvements although there were problems with data quality. Awareness of guidelines is generally low and guideline producers cannot assume that the public has a more positive perception of their material than of alternative sources of health information.    
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Example: 'Patients' perception of clinical guidelines was also influenced by whether they viewed menstrual disorders as being unique to the individual patient and requiring personal treatment or as a process in which women experience similar symptoms requiring similar treatment.'
'Patients and the public did not always see guidelines in a positive light; we found that many consider guidelines as a way to ration and deny access to care. Guideline producers may need
to overcome this barrier directly in the text of patient versions - perhaps by providing the evidence behind a recommendation to show where the recommendation came from, or to simply be explicit in saying that the aim of guidelines is not to ration care but to provide care based on the best evidence currently available.'
'When it came to participants' perceptions of [the guideline], they expressed a dislike for the cartoon-like format, which led some to actually question whether adults were the target audience and if the guide would be taken seriously.'
Comment - all studies were in high-income countries


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Kirsty Loudon, Nancy Santesso, Margaret Callaghan, Judith Thornton, Jenny Harbour, Karen Graham, Robin Harbour, Ilkka Kunnamo, Helena Liira, Emma McFarlane, Karen Ritchie and Shaun Treweek

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