Tomada de decisão compartilhada em artrite reumatoide: perspectivas dos pacientes, farmacêuticos e médicos

Abstract

Rheumatoid arthritis (RA) is an autoimmune, inflammatory and chronic disease. RA pharmacotherapy is complex. Therefore, patients with RA may benefit from the patient-centered comprehensive medication management service (CMM), in which the individual should participate in decisions about his or her drug therapy. In accordance with CMM principles, current guidelines for RA treatment state that all decisions should be shared with the patient. Thus, the objective of this thesis is to understand the inherent aspects of patients with RA for shared decision-making, as well as to unveil the nuances of the relationship established among patients, pharmacists and physicians during shared decision-making. Considering the various dimensions of this thesis, a mixed methods approach was carried out at the Rheumatology Service of university hospital. An exploratory cross-sectional study has been conducted to describe the functional capacity, health literacy and level of activation of patients with RA, as well as to evaluate the factors associated with their functional capacity. Then, a grounded theory study was carried out to understand if patients with different levels of health literacy and/or activation consider themselves prepared for shared decision-making and how they experience this process. Through the lens of autoethnography, a description on how patient, pharmacist, physician triad is established for shared decision-making was carried out. The cross-sectional study revealed the presence of adequate health literacy, higher levels of activation were negatively and independently associated with reduced functional status (moderate to severe limitation). These initial results suggest that health professionals should be alert and intervene to improve these aspects that may interfere with RA control. The use of ground theory allowed the construction of four main categories: "Accepting changes: decisions not shared"; “The patient's rationality: why not to share?”; Achieving the requirements for shared decision-making: expanding autonomy"; and “Experiencing decision sharing: 'it's no use changing the medication, if I don't use it'”. These categories revealed that patients with adequate health literacy still do not experience the shared decision-making process. However, respondents were active in managing their health conditions when making decisions on their own. The theoretical model developed explains that shared decision-making is the way to consider the patient's medication experiences and prevent them from needing to make decisions without support. Finally, the process of reflection promoted by autoethnography revealed the existing ruptures in the sharing of decisions among pharmacists, patients and physicians; as well as it promoted dialogue, allowing for the understanding and strengthening of the interprofessional relationships that were established. The descriptions present in the narratives indicate that it is possible to start the decision shared between patient and pharmacist, with the conclusion of the process in the meeting with the physician, when the roles and responsibilities of each member of the triad are well defined and there is an alignment of the principles of shared decision-making. It is expected that the outcomes of this thesis foster interprofessional shared decision-making, focusing on patient’s autonomy. Thereby, they can contribute to patients achieving better outcomes in the control of RA and other health problems.