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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: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:ObjectiveTo explore the evidence on nurses' experiences and preferences around shift patterns in the international literature.Data sourcesElectronic databases (CINHAL, MEDLINE and Scopus) were searched to identify primary studies up to April 2021.MethodsPapers reporting qualitative or quantitative studies exploring the subjective experience and/or preferences of nurses around shift patterns were considered, with no restrictions on methods, date or setting. Key study features were extracted including setting, design and results. Findings were organised thematically by key features of shift work.Results30 relevant papers were published between 1993 and 2021. They contained mostly qualitative studies where nurses reflected on their experience and preferences around shift patterns. The studies reported on three major aspects of shift work: shift work per se (i.e. the mere fact of working shift), shift length, and time of shift. Across all three aspects of shift work, nurses strive to deliver high quality of care despite facing intense working conditions, experiencing physical and mental fatigue or exhaustion. Preference for or adaptation to a specific shift pattern is facilitated when nurses are consulted before its implementation or have a certain autonomy to self-roster. Days off work tend to mitigate the adverse effects of working (short, long, early or night) shifts. How shift work and patterns impact on experiences and preferences seems to also vary according to nurses' personal characteristics and circumstances (e.g. age, caring responsibilities, years of experience).ConclusionsShift patterns are often organised in ways that are detrimental to nurses' health and wellbeing, their job performance, and the patient care they provide. Further research should explore the extent to which nurses' preferences are considered when choosing or being imposed shift work patterns. Research should also strive to better describe and address the constraints nurses face when it comes to choice around shift patterns.

Project description:BackgroundMatching demand and supply in nursing work continues to generate debate. Current approaches focus on objective measures, such as nurses per occupied bed or patient classification. However, staff numbers do not tell the whole staffing story. The subjective measure of nurses' perceived adequacy of staffing (PAS) has the potential to enhance nurse staffing methods in a way that goes beyond traditional workload measurement or workforce planning methods.ObjectivesTo detect outcomes associated with nurses' PAS and the factors that influence PAS and to review the psychometric properties of instruments used to measure PAS in a hospital setting.Design and methodsA scoping review was performed to identify outcomes associated with PAS, factors influencing PAS and instruments measuring PAS. A search of PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Business Source Complete and Embase databases identified 2609 potentially relevant articles. Data were independently extracted, analysed and synthesised. The quality of studies describing influencing factors or outcomes of PAS and psychometric properties of instruments measuring PAS were assessed following the National Institute for Health and Care Excellence quality appraisal checklist and the COnsensus-based Standards for the selection of health Measurement INstruments guidelines.ResultsSixty-three studies were included, describing 60 outcomes of PAS, 79 factors influencing PAS and 21 instruments measuring PAS. In general, positive PAS was related to positive outcomes for the patient, nurse and organisation, supporting the relevance of PAS as a staffing measure. We identified a variety of factors that influence PAS, including demand for care, nurse supply and organisation of care delivery. Associations between these factors and PAS were inconsistent. The quality of studies investigating the development and evaluation of instruments measuring PAS was moderate.ConclusionsMeasuring the PAS may enhance nurse staffing methods in a hospital setting. Further work is needed to refine and psychometrically evaluate instruments for measuring PAS.

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

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

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