Article type
Abstract
"Background: Human Brucellosis is caused by the genus Brucella spp bacteria, a zoonosis that has worldwide epidemiology significance and distribution throughout the world, with important occupational, health and economic impacts. However, it is still a little-known disease, difficult to diagnose, underreported, neglected and with challenging treatment. One of the initiatives of the Brazilian Unified Health System (SUS) to deal with this situation is the creation of Clinical Practice Guideline (CPG) containing the diagnosis, treatment and monitoring of the disease. During the elaborating CPG process, it was verified the absence of registered patients nor patient associations, which are essential for guaranteeing social participation.
Objectives: To develop a strategy to enable access and use of the patient's perspective during the scope meeting of Human Brucellosis CPG elaboration.
Methods: The information about practical scenario and active surveillance with people who had been diagnosed with Brucellosis was obtained of epidemiological surveillance and occupational health database. After attempts to invite these people to participate in the scope meeting, the standard 14-question script used for social participation was adapted and validated by the internal team. The questionnaire was sent to people who agreed to contribute their reports, by messaging software or to boss's e-mail.
Results: Preliminary telephone contacts highlighted the existence of social, labor and infrastructure issues that makes unfeasible the synchronous participation of patients with Brucellosis (such as privation of internet access, personal email and rural work schedule). Considering the points of interest to be changed in the standard script, the questionnaire structured with 10 questions was capable of covering relevant aspects of health condition (disease’s comprehension, diagnostic process and an open space for considerations), as well question’s simplification (grouping how and when the disease occurred, description of drug treatment and symptoms after treatment) and adapting the text to an easier language to optimize understanding.
Conclusions: The strategy developed can be an additional alternative, not a substitute, for the current process. It makes possible to include the patient's perspective in the CGP elaboration process even for health conditions whose patient associations are non-existent and/or in which sociocultural and socioeconomic determinants add practical limitations.
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Objectives: To develop a strategy to enable access and use of the patient's perspective during the scope meeting of Human Brucellosis CPG elaboration.
Methods: The information about practical scenario and active surveillance with people who had been diagnosed with Brucellosis was obtained of epidemiological surveillance and occupational health database. After attempts to invite these people to participate in the scope meeting, the standard 14-question script used for social participation was adapted and validated by the internal team. The questionnaire was sent to people who agreed to contribute their reports, by messaging software or to boss's e-mail.
Results: Preliminary telephone contacts highlighted the existence of social, labor and infrastructure issues that makes unfeasible the synchronous participation of patients with Brucellosis (such as privation of internet access, personal email and rural work schedule). Considering the points of interest to be changed in the standard script, the questionnaire structured with 10 questions was capable of covering relevant aspects of health condition (disease’s comprehension, diagnostic process and an open space for considerations), as well question’s simplification (grouping how and when the disease occurred, description of drug treatment and symptoms after treatment) and adapting the text to an easier language to optimize understanding.
Conclusions: The strategy developed can be an additional alternative, not a substitute, for the current process. It makes possible to include the patient's perspective in the CGP elaboration process even for health conditions whose patient associations are non-existent and/or in which sociocultural and socioeconomic determinants add practical limitations.
"