Dataset Information

How well do guidelines incorporate evidence on patient preferences?

ABSTRACT:

Background

Clinical practice guidelines (CPG) are meant to consider important values such as patient preferences.

Objective

To assess how well clinical practice guidelines (CPGs) integrate evidence on patient preferences compared with that on treatment effectiveness.

Design

A cross-sectional review of a listing in 2006 of CPGs judged to be the best in their fields by an external joint government and medical association body.

Study selection

Exclusion criterion was unavailability in electronic format. Sixty-five of 71 listed CPGs met selection criteria.

Measurements

Two instruments originally constructed to evaluate the overall quality of CPGs were adapted to specifically assess the quality of integrating information on patient preference vs. treatment effectiveness. Counts of words and references in each CPG associated with patient preferences vs. treatment effectiveness were performed. Two reviewers independently assessed each CPG.

Main results

Based on our adapted instruments, CPGs scored significantly higher (p < 0.001) on the quality of integrating treatment effectiveness compared with patient preferences evidence (mean instrument one scores on a scale of 0.25 to 1.00: 0.65 vs. 0.43; mean instrument two scores on a scale of 0 to 1: 0.58 vs. 0.18). The average percentage of the total word count dedicated to treatment effectiveness was 24.2% compared with 4.6% for patient preferences. The average percentage of references citing treatment effectiveness evidence was 36.6% compared with 6.0% for patient preferences.

Conclusion

High quality CPGs poorly integrate evidence on patient preferences. Barriers to incorporating preference evidence into CPGs should be addressed.

SUBMITTER: Chong CA

PROVIDER: S-EPMC2710487 | biostudies-literature | 2009 Aug

REPOSITORIES: biostudies-literature

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Publications

How well do guidelines incorporate evidence on patient preferences?

Chong Christopher A K Y CA Chen Ing-je IJ Naglie Gary G Krahn Murray D MD

Journal of general internal medicine 20090423 8

<h4>Background</h4>Clinical practice guidelines (CPG) are meant to consider important values such as patient preferences.<h4>Objective</h4>To assess how well clinical practice guidelines (CPGs) integrate evidence on patient preferences compared with that on treatment effectiveness.<h4>Design</h4>A cross-sectional review of a listing in 2006 of CPGs judged to be the best in their fields by an external joint government and medical association body.<h4>Study selection</h4>Exclusion criterion was un ...[more]

PMID: 19387746

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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:BACKGROUND:Patient preferences are key parameters to evaluate benefit-harm balance of statins for primary prevention but they are not readily available to guideline developers and decision makers. Our study aimed to elicit patient preferences for benefit and harm outcomes related to use of statins for primary cardiovascular disease prevention and to examine how the preferences differ across economically and socio-culturally different environments. METHODS:We conducted preference-eliciting surveys using best-worst scaling designed with a balanced incomplete-block design (BIBD) on 13 statins-related outcomes on 220 people in Ethiopia and Switzerland. The participants made tradeoff decisions and selected the most and least worrisome outcomes concurrently from each scenario generated using the BIBD. The design yielded 34,320 implied paired-comparisons and 2860 paired-responses as unit of analysis for eliciting the preferences that were analyzed using a conditional-logit model on a relative scale and surface under the cumulative ranking curve from multivariate random-effects meta-analysis model on a scale of 0 to 1. RESULTS:There was high internal consistency of responses and minimal amount of measurement error in both surveys. Severe stroke was the most worrisome outcome with a ceiling preference of 1 (on 0 to 1 scale) followed by severe myocardial infarction, 0.913 (95% CI, 0.889-0.943), and cancer, 0.846 (0.829-0.855); while treatment discontinuation, 0.090 (0.023-0.123), and nausea/headache, 0.060 (0.034-0.094) were the least worrisome outcomes. Preferences were similar between Ethiopia and Switzerland with overlapping uncertainty intervals and concordance correlation of 0.97 (0.90-0.99). CONCLUSIONS:Our study provides much needed empirical evidence on preferences that help clinical guidelines consider for weighing the benefit and harm outcomes when recommending for or against statins for primary prevention of cardiovascular disease. The preferences are consistent across the disparate settings; however, we recommend inclusion of more countries in future studies to ensure the generalizability of the preferences to all environments.

Dataset Information

How well do guidelines incorporate evidence on patient preferences?

Background

Objective

Design

Study selection

Measurements

Main results

Conclusion

Publications

How well do guidelines incorporate evidence on patient preferences?

Similar Datasets

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