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

Abstract

BackgroundClinical 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.MethodsWe 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.ResultsWe 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.ConclusionThere 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.

Dissemination of Clinical Practice Guidelines

“…For health care professionals, CPG databases and portals overcome this challenge, and perhaps a similar website or portal of patient versions by topic may be useful for patients and the public. Our review of qualitative research about attitudes and beliefs about guidelines indicated that people do not necessarily trust information from guidelines [4]. While the majority of patient versions included logos of national and professional organisations which may convey credible sources, logos do not convey that these patient versions are providing recommendations that are based on a rigorous process which should be emphasised in these versions.…”

“…In contrast, materials for patient empowerment build upon patient education, and also include information to help people consider their own experiences, preferences and resources to inform decisions [3]. While building on the research for communicating research to patients is helpful, our recent systematic review of the literature about patient and public attitudes to CPGs found that there may be unique factors to consider when communicating guidelines [4]. Our review found that people may not always perceive guidelines positively.…”

“…We developed a coding form and data abstraction sheet for manifest and latent content based on categories informed by the literature about patient education materials and research into disseminating guidelines and recommendations to practitioners [2,3,4,11]. Key components of the patient versions were extracted: format of the patient versions (e.g.…”

“…length, booklet), types of information provided (background, tests or treatments, evidence, recommendations, and additional information), the purpose of the patient versions, and communication of recommendations and evidence (see Supporting Information for the key components extracted and themes). We used the work from Dixon-Woods [3] to develop a list of the purposes of patient versions; we identified recommendations using the criteria outlined by Hussain [11]; identified important factors unique to guideline recommendations, such as patient values and preferences using the GRADE approach [2]; and used the themes found in the systematic review of patient and public attitudes towards CPGs (personalisation, credibility, purpose and format issues) [4]. Two investigators piloted the form using four patient versions and discussed results to check intercoder reliability and consistency, and then revised the form accordingly.…”

Is Australian primary care practice equipped to provide multimorbidity care?

“…In shared decision-making, information exchange is bi-directional (246), but guidelines are predominantly uni-directional, with information on the benefits and harms transferring from 132 clinician to patient (441). Primary care clinicians have called for improvements that foster patient-centred management of multiple conditions and strengthen the patient voice (33,67,250,308,309).…”