What do patients and the public know about clinical practice guidelines and what do they want from them? A qualitative study.
BACKGROUND
Guideline producers are increasingly producing versions of guidelines for the public. The aim of this study was to explore what patients and the public understand about the purpose and production of clinical guidelines, and what they want from clinical guidelines to support their healthcare decisions.


METHODS
Participants were purposively selected to represent a range of the likely users of patient versions of guidelines, including individuals with health conditions (diabetes and depression), general members of the public, health communication professionals and a group of young people. Participants were asked about their awareness and understanding of clinical guidelines and presented with scenario recommendations, or draft materials from patient guidelines to prompt discussion. Each discussion was facilitated by one or two researchers. All focus groups were recorded and transcribed prior to analysis. Data were analysed using framework analysis.


RESULTS
We ran nine focus groups involving 62 individuals, supplemented by four interviews with people experiencing homelessness. Eight groups were held in Scotland, one in England. The four interviews were held in Scotland. The framework analysis yielded five themes: access and awareness; what patients want to know; properties of guidelines; presenting evidence; and format. Awareness of guidelines was low. Participants emphasised the need for information that enables them to choose between treatment options, including harms. They would like help with this from healthcare professionals, especially general practitioners. Participants differed in their support for the inclusion of numerical information and graphs.


CONCLUSIONS
Members of the public want information to help them choose between treatments, including information on harms, particularly to support shared decisions with health professionals. Presenting numerical information is a challenge and layered approaches that present information in stages may be helpful. Ignoring the themes identified in this study is likely to lead to materials that fail to support public and patient healthcare decision making.
Healthcare Improvement Scotland, Gyle Square, 1 South Gyle Crescent, Edinburgh, EH12 9EB, UK. n.fearns@nhs.net.
Naomi
http://orcid.org/0000-0002-4462-4873
N
Fearns
Healthcare Improvement Scotland, Gyle Square, 1 South Gyle Crescent, Edinburgh, EH12 9EB, UK.
Joanna
J
Kelly
Healthcare Improvement Scotland, Gyle Square, 1 South Gyle Crescent, Edinburgh, EH12 9EB, UK.
Margaret
M
Callaghan
Healthcare Improvement Scotland, Gyle Square, 1 South Gyle Crescent, Edinburgh, EH12 9EB, UK.
Karen
K
Graham
University of Stirling, Scotland, UK.
Kirsty
K
Loudon
Healthcare Improvement Scotland, Gyle Square, 1 South Gyle Crescent, Edinburgh, EH12 9EB, UK.
Robin
R
Harbour
Department of Clinical Epidemiology and Biostatistics, McMaster University, 1280 Main Street West, Hamilton, Ontario, L8S4L8, Canada.
Nancy
N
Santesso
National Institute for Health and Care Excellence, England, UK.
Emma
E
McFarlane
National Institute for Health and Care Excellence, England, UK.
Judith
J
Thornton
Health Services Research Unit, University of Aberdeen, Scotland, UK.
Shaun
S
Treweek
D000293:Adolescent; D000328:Adult; D000368:Aged; D004739:England; D005260:Female; D017144:Focus Groups; D017408:Guidelines as Topic; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D010818:Practice Patterns, Physicians'; D036301:Qualitative Research; D012606:Scotland; D055815:Young Adult
Clinical practice guideline; Guidelines; Patient guidelines; Patient version