Emma McFarlane

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

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.

Updated recommendations: an assessment of NICE clinical guidelines

BackgroundUpdating is important to ensure clinical guideline (CG) recommendations remain valid. However, little research has been undertaken in this field. We assessed CGs produced by the National Institute for Health and Care Excellence (NICE) to identify and describe updated recommendations and to investigate potential factors associated with updating. Also, we evaluated the reporting and presentation of recommendation changes.MethodsWe performed a descriptive analysis of original and updated CGs and recommendations, and an assessment of presentation formats and methods for recording information. We conducted a case-control study, defining cases as original recommendations that were updated (‘new-replaced’ recommendations), and controls as original recommendations that were considered to remain valid (‘not changed’ recommendations). We performed a comparison of main characteristics between cases and controls, and we planned a multiple regression analysis to identify potential predictive factors for updating.ResultsWe included nine updated CGs (1,306 recommendations) and their corresponding original versions (1,106 recommendations). Updated CGs included 812 (62%) recommendations ‘not reviewed’, 368 (28.1%) ‘new’ recommendations, 104 (7.9%) ‘amended’ recommendations, and 25 (1.9%) recommendations reviewed but unchanged. The presentation formats used to indicate the changes in recommendations varied widely across CGs. Changes in ‘amended’, ‘deleted’, and ‘new-replaced’ recommendations (n = 296) were reported infrequently, mostly in appendices. These changes were recorded in 167 (56.4%) recommendations; and were explained in 81 (27.4%) recommendations. We retrieved a total of 7.1% (n = 78) case recommendations (‘new-replaced’) and 2.4% (n = 27) control recommendations (‘not changed’) in original CGs. The updates were mainly from ‘Fertility CG’, about ‘gynaecology, pregnancy and birth’ topic, and ‘treatment’ or ‘prevention’ purposes. We did not perform the multiple regression analysis as originally planned due to the small sample of recommendations retrieved.ConclusionOur study is the first to describe and assess updated CGs and recommendations from a national guideline program. Our results highlight the pressing need to standardise the reporting and presentation of updated recommendations and the research gap about the optimal way to present updates to guideline users. Furthermore, there is a need to investigate updating predictive factors.

Patients, health information, and guidelines: A focus-group study

Background. Evidence-based clinical guidelines could support shared decision-making and help patients to participate actively in their care. However, it is not well known how patients view guidelines as a source of health information. This qualitative study aimed to assess what patients know about guidelines, and what they think of their presentation formats. Research question. What is the role of guidelines as health information for patients and how could the implementation of evidence-based information for patients be improved? Methods. A qualitative study with focus groups that were built around a semi-structured topic guide. Focus groups were audiotaped and transcribed and analysed using a phenomenographic approach. Results. Five focus groups were carried out in 2012 with a total of 23 participants. Patients searched for health information from the Internet or consulted health professionals or their personal networks. The concepts of guidelines included instructions or standards for health professionals, information given by a health professional to the patient, and material to protect and promote the interests of patients. Some patients did not have a concept for guidelines. Patients felt that health information was abundant and its quality sometimes difficult to assess. They respected conciseness, clarity, clear structure, and specialists or well-known organizations as authors of health information. Patients would like health professionals to deliver and clarify written materials to them or point out to them the relevant Internet sites. Conclusions. The concept of guidelines was not well known among our interviewees; however, they expressed an interest in having more communication on health information, both written information and clarifications with their health professionals.

Dissemination of Clinical Practice Guidelines : A Content Analysis of Patient Versions

Background. Clinical practice guidelines (CPGs) are typically written for health care professionals but are meant to assist patients with health care decisions. A number of guideline producers have started to develop patient versions of CPGs to reach this audience. Objective. To describe the content and purpose of patient versions of CPGs and compare with patient and public views of CPGs. Design. A descriptive qualitative study with a directed content analysis of a sample of patient versions of CPGs published and freely available in English from 2012 to 2014. Results. We included 34 patient versions of CPGs from 17 guideline producers. Over half of the patient versions were in dedicated patient sections of national/professional agency websites. There was essentially no information about how to manage care in the health care system. The most common purpose was to equip people with information about disease, tests or treatments, and recommendations, but few provided quantitative data about benefits and harms of treatments. Information about beliefs, values and preferences, accessibility, costs, or feasibility of the interventions was rarely addressed. Few provided personal stories or scenarios to personalize the information. Three versions described the strength of the recommendation or the level of evidence. Limitations. Our search for key institutions that produce patient versions of guidelines was comprehensive, but we only included English and freely available versions. Future work will include other languages. Conclusions. This review describes the current landscape of patient versions of CPGs and suggests that these versions may not address the needs of their targeted audience. Research is needed about how to personalize information, provide information about factors contributing to the recommendations, and provide access.

Development of a prioritisation tool for the updating of clinical guideline questions: the UpPriority Tool protocol

Introduction Due to a continuous emergence of new evidence, clinical guidelines (CGs) require regular surveillance of evidence to maintain their trustworthiness. The updating of CGs is resource intensive and time consuming; therefore, updating may include a prioritisation process to efficiently ensure recommendations remain up to date. The objective of our project is to develop a pragmatic tool to prioritise clinical questions for updating within a CG. Methods and analysis To develop the tool, we will use the results and conclusions of a systematic review of methodological research on prioritisation processes for updating and will adopt a methodological approach we have successfully implemented in a previous experience. We will perform a multistep process including (1) generation of an initial version of the tool, (2) optimisation of the tool (feasibility test of the tool, semistructured interviews, Delphi consensus survey, external review by CG methodologists and users and pilot test of the tool) and (3) approval of the final version of the tool. At each step of the process, we will (1) calculate absolute frequencies and proportions (quantitative data), (2) use content analysis to summarise and draw conclusions (qualitative data) and (3) draft a final report, discuss results and refine the previous versions of the tool. Finally, we will calculate intraclass coefficients with 95% CIs for each item and overall as indicators of agreement among reviewers. Ethics and dissemination We have obtained a waiver of approval from the Clinical Research Ethics Committee at the Hospital de la Santa Creu i Sant Pau (Barcelona). The results of the study will be published in peer-reviewed journal and communicated to interested stakeholders. The tool could support the standardisation of prioritisation processes for updating CGs and therefore have important implications for a more efficient use of resources in the CG field.

Dissemination of clinical practice guidelines: A content analysis of patient versions (Forthcoming/Available Online)

Background. Clinical practice guidelines (CPGs) are typically written for health care professionals but are meant to assist patients with health care decisions. A number of guideline producers have started to develop patient versions of CPGs to reach this audience. Objective. To describe the content and purpose of patient versions of CPGs and compare with patient and public views of CPGs. Design. A descriptive qualitative study with a directed content analysis of a sample of patient versions of CPGs published and freely available in English from 2012 to 2014. Results. We included 34 patient versions of CPGs from 17 guideline producers. Over half of the patient versions were in dedicated patient sections of national/professional agency websites. There was essentially no information about how to manage care in the health care system. The most common purpose was to equip people with information about disease, tests or treatments, and recommendations, but few provided quantitative data about benefits and harms of treatments. Information about beliefs, values and preferences, accessibility, costs, or feasibility of the interventions was rarely addressed. Few provided personal stories or scenarios to personalize the information. Three versions described the strength of the recommendation or the level of evidence. Limitations. Our search for key institutions that produce patient versions of guidelines was comprehensive, but we only included English and freely available versions. Future work will include other languages. Conclusions. This review describes the current landscape of patient versions of CPGs and suggests that these versions may not address the needs of their targeted audience. Research is needed about how to personalize information, provide information about factors contributing to the recommendations, and provide access.

002 Public Attitudes to and Knowledge of Healthcare Guidelines, and Methods to Communicate Guideline Recommendations to Patients and the Public - A Systematic Review

Background Improving patient versions of guidelines is one way to support an increasing role for patients in health decision making. Objectives To evaluate evidence on the public’s attitudes and knowledge of clinical practice guidelines AND what strategies have been used to communicate guideline recommendations to this group. Methods We conducted a systematic review of public attitudes and knowledge of clinical practice guidelines to inform the development of dissemination strategies for this population. We searched health databases from 2000 to 01/2013, grey literature, and we contacted guideline producers. Two reviewers independently abstracted, coded, synthesised themes from the studies. Results We included 25 published studies and three reports (CCPG, NICE, SIGN). There was a huge variation in the public’s awareness of guidelines (12 studies) from 25–75%. The key themes to communicate guidelines (15 studies) to the public included, predictive factors (amount of education), personalisation, access to care, trustworthiness (evidence behind recommendations), and self-management. Discussion Although there were few studies for thematic analysis there were recurrent themes. When developing patient versions, the danger could be to focus on detailed formatting instead of fundamental issues around whether patients dismiss guidelines as not applicable to their unique situation and restricts care. The results will inform work focused on the public and patients being done in EU FP7 DECIDE project. Implications Guideline producers will need to increase the public’s awareness of clinical guidelines and developing communication strategies that are clearly personally applicable, trustworthy and useful for patients and carers managing their care.