ABSTRACT

Objective: Personal experiences, perceptions, and views of patients are crucial in understanding the subjective impacts of diseases. The complexity and duration of tuberculosis treatment impose significant physical, emotional, social, and economic burdens, highlighting the need for person-centered, integrated care strategies that address stigma, fatigue, and accessibility to support well-being. Patient-reported outcomes (PROs) are essential for capturing patient perspectives and improving health care strategies. In this study we explored the multifaceted experiences of patients with tuberculosis, seeking to understand their values and priorities during treatment. Methods: Semistructured interviews with adult tuberculosis patients were conducted at a referral center for tuberculosis diagnosis and management in northern Portugal. After verbatim transcription and anonymization, thematic analysis was performed. Results: Seventeen interviews were conducted. Most (58.8%) of the study participants were male, and most had pulmonary tuberculosis. Our thematic analysis identified five PROs: treatment experiences; health-related quality of life; functional status; symptoms and symptom burden; and health behaviors. People with tuberculosis acknowledged the impact of multiple factors on their overall health, particularly the psychological and physical burdens of tuberculosis and its treatment. Several areas for improvement and opportunities for enhanced support were identified, particularly in communication, emotional support, and management of treatment burden. Conclusions: Our findings highlight the need for tailored PRO measures (PROMs) addressing treatment burden, psychosocial distress, and functional limitations in tuberculosis care. Enhancing communication, psychological support, and multidisciplinary approaches in tuberculosis management could improve patient outcomes and overall well-being. Addressing tuberculosis-related stigma and providing targeted interventions may contribute to a more people-centered approach to care.

Keywords: Patient reported outcome measures; Qualitative research; Quality of life; Tuberculosis.

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