Sofrimento não é efeito adverso: a integração das experiências dos pacientes com tuberculose resistente a medicamentos no processo de avaliação de tecnologias em saúde.

Abstract

The development of drug-resistant tuberculosis as a neglected disease is intrinsically linked to multiple social vulnerabilities. The limited interest of the pharmaceutical industry in developing drug technologies, combined with constraints in the Health Technology Assessment (HTA) process, exposes patients to the consequences of existing therapies, with significant physical and social repercussions. In this context, the objective of this study was to analyze the experiences, perceptions, and opinions of individuals affected by drug-resistant tuberculosis, as well as their potential contributions to the health technology assessment process within CONITEC. This is a qualitative, that employed Content Analysis as proposed by Bardin. A documentary analysis was conducted of the contributions submitted to public consultations promoted by CONITEC, enabling the identification of participant profiles and the content of their feedback. In parallel, a Qualitative Evidence Synthesis was carried out, from which four major thematic categories emerged: (1) the central role of adverse effects in shaping a negative treatment experience; (2) the complexity of the therapeutic regimen, marked by a high pill burden; (3) the repercussions of treatment on labor, economic, and emotional dimensions; and (4) the impact of the presence or absence of social support throughout the therapeutic journey. The findings reveal that the treatment of drug-resistant tuberculosis significantly affects the lives of patients and their families from biological, social, emotional, and occupational perspectives. The therapeutic process is prolonged and marked by suffering, severe side effects, and disruptions in life projects. These elements highlight the urgent need for health technology assessment models that incorporate the subjective dimension and actively listen to affected individuals, recognizing suffering as a relevant factor to guide fairer, more sensitive, and equitable decision-making processes.