Patient-reported outcomes in tuberculosis: A qualitative exploration of psychosocial, economic, and treatment-related challenges
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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.
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A scoping review is timely because the End TB Strategy and the WHO mhGAP framework have explicitly called for integration of mental health and psychosocial care into TB programs, while the number of primary trials and qualitative studies in this area has expanded substantially over the past five years.
“A scoping review is particularly timely now because the End TB Strategy [13] and the WHO mhGAP framework [17] have explicitly called for the integration of mental health and psychosocial care into TB programs, while the number of primary trials and qualitative studies in this area has expanded substantially over the past five years [18,19,20,21].”
From Psychosocial Interventions for Improving Treatment Adherence in Tuberculosis Patients: A Scoping Review of Evidence-Based Approaches. (2026) · cites this paper as [21]
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“…trials ( n = 3) [28–30], quasi-experimental studies ( n = 2) [31,32], mixed-method studies ( n = 2) [18,33], qualitative studies ( n = 3) [21,34,35], one program evaluation ( n = 1) [36], one retrospective cohort study ( n = 1) [19], and one matched case–control study ( n = 1) [37].”
- Authors
- Viegas1, P., L Ferreira1, L., Vieira2, 3., Barbosa2, P., P Ramos2, 3., & Duarte2, 3.
- Affiliations
- 1. Serviço de Pneumologia, Unidade Local de Saúde de Gaia/Espinho - ULSGE - Vila Nova de Gaia, Portugal.
- 2. EPIUnit ITR, Instituto de Saúde Pública, Universidade do Porto, Porto, Portugal. 3. Instituto de Ciências Biomédicas Abel Salazar, Universidade do Porto, Porto, Portugal.
- 2. EPIUnit ITR, Instituto de Saúde Pública, Universidade do Porto, Porto, Portugal.
- 2. EPIUnit ITR, Instituto de Saúde Pública, Universidade do Porto, Porto, Portugal. 3. Instituto de Ciências Biomédicas Abel Salazar, Universidade do Porto, Porto, Portugal. 4. Instituto Nacional de Saúde Doutor Ricardo Jorge - INSA-Porto - Porto, Portugal.
- Venue
- Jornal Brasileiro de Pneumologia
- Published
- 2025-08-28
- Volume
- 51
- Issue
- 4
- Pages
- e20250159
- ISSN
- 1806-3713 (ISSN-L)
- 1806-3756
- PMC
- PMC12602053
- OpenAlex
- W4414090065
- Cited by
- 1
- References
- 27
- Citations by year
- 2026: 1
- FWCI
- 0.76
- Type
- journal article
- Language
- en
- Open access
- diamond
- doi.org
- Licence
- cc-by-nc
- Locations
- Jornal Brasileiro de Pneumologia (publishedVersion, cc-by-nc)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Portuguese National Funding Agency for Science, Research and Technology (RCAAP Project by FCT) (submittedVersion, other-oa)
- Topics
- Health Sciences › Medicine › Infectious Diseases › Tuberculosis Research and Epidemiology
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Education › Health Education and Validation
- Keywords
- tuberculosis, patient-reported outcomes, patient experience, treatment burden, health-related quality of life, functional status, symptom burden, health behavior, psychosocial distress, stigma, emotional support, patient-provider communication, multidisciplinary care, person-centred care
- MeSH terms
- Patient Reported Outcome Measures, Adult, Aged, Female, Humans, Interviews as Topic, Male, Middle Aged, Portugal, Quality of Life, Socioeconomic Factors, Tuberculosis, Tuberculosis, Pulmonary, Cost of Illness, Qualitative Research, Young Adult, Social Stigma
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