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How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review.

ABSTRACT: Background: Clinical guidelines optimize care delivery and outcomes. Guidelines support patient engagement and adherence if they reflect patient preferences for treatment options, risks and benefits. Many guidelines do not address patient preferences. Developers require insight on how to develop such guidelines.

Objective: To conduct a scoping review on how to identify, incorporate and report patient preferences in guidelines.

Search: We searched MEDLINE, EMBASE, Scopus, CINAHL, OpenGrey and GreyLit from 2010 to November 2019.

Eligibility: We included English language studies describing patient preferences and guidelines.

Data extraction and synthesis: We reported approaches for and determinants and impacts of identifying patient preferences using summary statistics and text, and interpreted findings using a conceptual framework of patient engagement in guideline development.

Results: Sixteen studies were included: 2 consulted patients and providers about patient engagement approaches, and 14 identified patient preferences (42.9%) or methods for doing so (71.4%). Studies employed single (57.1%) or multiple (42.9%) methods for identifying preferences. Eight (57.1%) incorporated preferences in one aspect of guideline development, while 6 (42.9%) incorporated preferences in multiple ways, most commonly to identify questions, benefits or harms, and generate recommendations. Studies did not address patient engagement in many guideline development steps. Included studies were too few to establish the best approaches for identifying or incorporating preferences. Fewer than half of the studies (7, 43.8%) explored barriers. None examined reporting preferences in guidelines.

Conclusions: Research is needed to establish the single or multiple approaches that result in incorporating and reporting preferences in all guideline development steps.

SUBMITTER: Kim C

PROVIDER: S-EPMC7696279 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review.

Kim Claire C Armstrong Melissa J MJ Berta Whitney B WB Gagliardi Anna R AR

Health expectations : an international journal of public participation in health care and health policy 20200712 5

<h4>Background</h4>Clinical guidelines optimize care delivery and outcomes. Guidelines support patient engagement and adherence if they reflect patient preferences for treatment options, risks and benefits. Many guidelines do not address patient preferences. Developers require insight on how to develop such guidelines.<h4>Objective</h4>To conduct a scoping review on how to identify, incorporate and report patient preferences in guidelines.<h4>Search</h4>We searched MEDLINE, EMBASE, Scopus, CINAH ...[more]

PMID: 32656807

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Project description:Background: Guidelines based on patient preferences differ from those developed solely by clinicians and may promote patient adherence to guideline recommendations. There is scant evidence on how to develop patient-informed guidelines. This study aimed to describe how guideline developers identify, incorporate and report patient preferences.Methods: We employed a descriptive cross-sectional survey design. Eligible organizations were non-profit agencies who developed at least one guideline in the past five years and had considered patient preferences in guideline development. We identified developers through the Guidelines International Network and publicly-available guideline repositories, administered the survey online, and used summary statistics to report results.Results: The response rate was 18.3% (52/284). Respondents included professional societies, and government, academic, charitable and healthcare delivery organizations from 18 countries with at least 1 to ?6?years of experience generating patient-informed guidelines. Organizations most frequently identified preferences through patient panelists (86.5%) and published research (84.6%). Most organizations (48, 92.3%) used multiple approaches to identify preferences (median 3, range 1 to 5). Most often, organizations used preferences to generate recommendations (82.7%) or establish guideline questions (73.1%). Few organizations explicitly reported preferences; instead, they implicitly embedded preferences in guideline recommendations (82.7%), questions (73.1%), or point-of-care communication tools (61.5%). Most developers had little capacity to generate patient-informed guidelines. Few offered training to patients (30.8%), or had dedicated funding (28.9%), managers (9.6%) or staff (9.6%). Respondents identified numerous barriers to identifying preferences. They also identified processes, resources and clinician- and patient-strategies that can facilitate the development of patient-informed guidelines. In contrast to identifying preferences, developers noted few approaches for, or barriers or facilitators of incorporating or reporting preferences.Conclusions: Developers emphasized the need for knowledge on how to identify, incorporate and report patient preferences in guidelines. In particular, how to use patient preferences to formulate recommendations, and transparently report patient preferences and the influence of preferences on guidelines is unknown. Still, insights from responding developers may help others who may be struggling to generate guidelines informed by patient preferences.

Project description:ObjectivesOrganisations that develop clinical practice guidelines (CPGs) encourage involvement of patients and the publics in their development, however, there are no standard methodologies for doing so. To examine how CPGs report patient and public involvement (PPI), we conducted a scoping review of the evidence addressing the following four questions: (1) who are the patients and publics involved in developing the CPG?; (2) from where and how are the patients and publics recruited?; (3) at what stage in the CPG development process are the patients and publics involved? and (4) how do the patients and publics contribute their views? We also extracted data on the use of PPI reporting checklists by the included studies.DesignWe used the methodology developed by Arksey and O'Malley and refined by the Joanna Briggs Institute. We searched PubMed, Embase, CINAHL and PsycINFO, websites of national guideline bodies from the UK, Canada, Australia and the USA, and conducted a forward citation search. No language, date or participant demographics restrictions were applied. Data were synthesised narratively.ResultsWe included 47 studies addressing 1 or more of the 4 questions. All included studies reported who the patient and publics involved (PPI members) were, and several studies reported PPI members from different groups. Patients were reported in 43/47 studies, advocates were reported in 22/47 studies, patients and advocates reported in 17/47 studies, and general public reported in 2/47 studies. Thirty-four studies reported from where the patients and publics were recruited, with patient groups being the most common (20/34). Stage of involvement was reported by 42/47 studies, most commonly at question identification (26/42) and draft review (18/42) stages. Forty-two studies reported how the patients contributed, most commonly via group meetings (18/42) or individual interviews. Ten studies cited or used a reporting checklist to report findings.ConclusionsOur scoping review has revealed knowledge gaps to inform future research in several ways: replication, terminology and inclusion. First, no standard approach to PPI in CPG development could be inferred from the research. Second, inconsistent terminology to describe patients and publics reduces clarity around which patients and publics have been involved in developing CPGs. Finally, the under-representation of research describing PPI in the development of screening, as opposed to treatment, CPGs warrants further attention.

Project description:PurposeProstate cancer screening guidelines have changed as new evidence showing an equivocal mortality benefit led many organizations to relax recommendations for this screening and instead suggest shared decision making. Presently, it is unknown how successfully these conversations happen. Our objective was to understand men's communication preferences when they discuss prostate cancer screening.MethodsIn this scoping review, we searched 4 electronic databases (Medline, Embase, PsycINFO, and CINAHL) and the gray literature. Additional studies were obtained from reference lists of included studies and relevant review articles. We included qualitative studies reporting patient perspectives relevant to the research question and published in English. Two independent researchers screened titles and abstracts based on these criteria, conducted a full-text review for final inclusion, evaluated the remaining articles for validity, extracted data, and used thematic analysis to build a thematic framework. A subgroup analysis was performed for Black men as many studies elicited their perspectives.ResultsAnalyses were based on 29 studies. We identified 4 main themes that men described as critical for successful prostate cancer screening risk discussions with their primary care clinician: using everyday language, receiving a sufficient quantity of information, spending enough time, and having a trusting and respectful relationship. Three additional themes emerged that prohibited men from having any discussions at all: having already decided to pursue prostate cancer screening, being passive in medical encounters, and perceiving threat to one's well-being. Black men faced racism, which impacted medical interactions.ConclusionsOur findings point to strategies to support men's communication preferences and address preconceptions surrounding prostate cancer screening. More studies are needed in certain underrepresented populations given the propensity for disparity in health outcomes.

Project description:BackgroundCancer is increasingly being treated as a chronic disease rather than an acute one-time illness. Additionally, oral anticancer therapies, as opposed to intravenous chemotherapy, are now available for an increasing number of cancer indications. Mobile health (mHealth) apps for use on mobile devices (eg, smartphones or tablets) are designed to help patients with medication adherence, symptom tracking, and disease management. Several previous literature reviews have been conducted regarding mHealth apps for cancer. However, these studies did not address patient preferences for the features of cancer mHealth apps.ObjectiveThe primary aim was to review the scientific literature that describes the features and functions of mHealth apps designed for cancer self-management.MethodsAs the purpose of this review was to explore the depth and breadth of research on mHealth app features for cancer self-management, a scoping review methodology was adopted. Four databases were used for this review: PubMed/MEDLINE, Embase, CINAHL, and PsycINFO. Citation and reference searches were conducted for manuscripts meeting the inclusion criteria. A gray literature search was also conducted. Data extracted from manuscripts included author, title, publication date, study type, sampling type, cancer type, treatment, age of participants, features, availability (free or subscription), design input, and patient preferences. Finally, the features listed for each app were compared, highlighting similarities across platforms as well as features unique to each app.ResultsAfter the removal of duplicates, 522 manuscripts remained for the title and abstract review, with 51 undergoing full-text review. A total of 7 manuscripts (referred to as studies hereafter) were included in the final scoping review. App features described in each study varied from 2 to 11, with a median of 4 features per app. The most reported feature was a symptom or side effect tracker, which was reported in 6 studies. Two apps specified the inclusion of patients and health care providers during the design, while 1 app noted that IT and communications experts provided design input. The utility of the apps for end users was measured in several ways, including acceptability (measuring the end users' experience), usability (assessing the functionality and performance by observing real users completing tasks), or qualitative data (reports from end users collected from interviews or focus groups).ConclusionsThis review explored the literature on cancer mHealth apps. Popular features within these mHealth apps include symptom trackers, cancer education, and medication trackers. However, these apps and features are often developed with little input from patients. Additionally, there is little information regarding patient preferences for the features of existing apps. While the number of cancer-related apps available for download continues to increase, further exploration of patient preferences for app features could result in apps that better meet patient disease self-management needs.

Project description:OBJECTIVE:Many treatment decisions are preference-sensitive and call for shared decision-making, notably when benefits are limited or uncertain, and harms impact quality of life. We explored if clinical practice guidelines (CPGs) acknowledge preference-sensitive decisions in how they motivate and phrase their recommendations. DESIGN:We performed a qualitative analysis of the content of CPGs and verified the results in semistructured interviews with CPG panel members. SETTING:Dutch oncology CPGs issued in 2010 or later, concerning primary treatment with curative intent. PARTICIPANTS:14 CPG panel members. MAIN OUTCOMES:For treatment recommendations from six CPG modules, two researchers extracted the following: strength of recommendation in terms of the Grading of Recommendations Assessment, Development and Evaluation and its consistency with the CPG text; completeness of presentation of benefits and harms; incorporation of patient preferences; statements on the panel's benefits-harm trade-off underlying recommendation; and advice on patient involvement in decision-making. RESULTS:We identified 32 recommendations, 18 were acknowledged preference-sensitive decisions. Three of 14 strong recommendations should have been weak based on the module text. The reporting of benefits and harms, and their probabilities, was sufficiently complete and clear to inform the strength of the recommendation in one of the six modules only. Numerical probabilities were seldom presented. None of the modules presented information on patient preferences. CPG panel's preferences were not made explicit, but appeared to have impacted 15 of 32 recommendations. Advice to involve patients and their preferences in decision-making was given for 20 recommendations (14 weak). Interviewees confirmed these findings. Explanations for lack of information were, for example, that clinicians know the information and that CPGs must be short. Explanations for trade-offs made were cultural-historical preferences, compliance with daily care, presumed role of CPGs and lack of time. CONCLUSIONS:The motivation and phrasing of CPG recommendations do not stimulate choice awareness and a neutral presentation of options, thus hindering shared decision-making.

Project description:BackgroundIncreasing numbers of family carers are providing informal care in community settings. This creates a number of challenges because family carers are at risk of poor physical and psychological health outcomes, with consequences both for themselves and those for whom they provide care. General Practitioners (GPs), who play a central role in community-based care, are ideally positioned to identify, assess, and signpost carers to supports. However, there is a significant gap in the literature in respect of appropriate guidance and resources to support them in this role.MethodsA scoping review was undertaken to examine clinical guidelines and recommendations for GPs to support them in their role with family carers. This involved a multidisciplinary team, in line with Arksey & O'Malley's framework, and entailed searches of ten peer-reviewed databases and grey literature between September-November 2020.ResultsThe searches yielded a total of 4,651 English language papers, 35 of which met the criteria for inclusion after removing duplicates, screening titles and abstracts, and performing full-text readings. Ten papers focused on resources/guidelines for GPs, twenty were research papers, three were review papers, one was a framework of quality markers for carer support, and one was an editorial. Data synthesis indicated that nine (90%) of the guidelines included some elements relating to the identification, assessment, and/or signposting of carers. Key strategies for identifying carers suggest that a whole practice approach is optimal, incorporating a role for the GP, practice staff, and for the use of appropriate supporting documentation. Important knowledge gaps were highlighted in respect of appropriate clinical assessment and evidence-based signposting pathways.ConclusionOur review addresses a significant gap in the literature by providing an important synthesis of current available evidence on clinical guidelines for GPs in supporting family carers, including strategies for identification, options for assessment and potential referral/signposting routes. However, there is a need for greater transparency of the existing evidence base as well as much more research to evaluate the effectiveness and increase the routine utilisation, of clinical guidelines in primary care.

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How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review.

Publications

How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review.

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