Patients’ participation in government-sponsored guidelines in Latin America: a cross-sectional study

Background. It is recommended that patients actively participate in clinical practice guideline (CPG) development, which allows consideration of their values and preferences and improves adherence to recommendations. The development of CPGs throughout Latin America is variable and diverse, and the inclusion of patients’ participation is unknown. Objectives. To evaluate the methods of patients’ participation in government-sponsored CPGs in Latin America, the type of CPG development and the use of Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methods. Design Cross-sectional study. We included CPGs developed over the last 10 years through a comprehensive hand search in official national government websites and biomedical databases. Main outcome measure. The type of patients’ participation was coded according to five predefined categories. We also report the proportion of application of GRADE methods. Results. We included 408 CPGs from 10 countries: 74% (n=303) were de novo development, 13%(n=55) used an adaptation method and 10%(n=41) used both adaptation and de novo methods. Only 45% (n=185) applied the GRADE approach, ranging from 14% (n=12) of CPGs in Brazil to 89% (n=56) of CPGs in Colombia. Only 23% (n=95) of CPGs included at least one method of patients’ participation. Mexico was one of the largest CPG producers (100 CPGs), but none included methods of patients’ participation; in turn, in countries with lower production of government-sponsored CPGs, patients’ participation was found in almost 88%. Guidelines using the GRADE approach were more likely to use methods of patients’ participation. These methods were highly variable: 46% (n=44) incorporated patients in the panel, 81% (n=77) searched for evidence about patients’ values and preferences, 43% (n=39) used an external review of the draft recommendations by patients, 38% (n=36) used public comments, and 2% included other methods for stakeholders’ participation. Conclusion. Only one quarter of government-sponsored CPGs in the Latin American region incorporated a method for patients’ participation, which varied considerably across the selected countries. These findings highlight the need to improve CPG development methods to systematically incorporate patients’ values and preferences when drafting recommendations.