Martín Dulce, Barbosa Pedro, Ramos João Pedro, Vieira Mariana, Duarte Raquel
Unidade de Investigação em Epidemiologia (EPI Unit), Instituto de Saúde Pública da Universidade do Porto, Porto, Portugal.
Saúde Comunitária, Estudos de Populações, Instituto de Ciências Biomédicas Abel Salazar, Universidade do Porto, Porto, Portugal.
Breathe (Sheff). 2024 Mar;20(1):230138. doi: 10.1183/20734735.0138-2023. Epub 2024 Mar 12.
Patient-reported outcomes (PROs) play a crucial role in understanding the impact of tuberculosis (TB) on both individuals and communities. Despite advances in TB treatment, conventional outcome definitions often overlook essential components of people with TB's experiences, leading to disparities in treatment understanding. The incorporation of PROs in TB scientific research can help bridge the gap between the health system and people's needs and expectations. PROs can offer valuable insights into non-observable constructs like health literacy, self-efficacy and overall wellbeing, contributing to the comprehensive assessment of diagnosis, treatment and research end-points. Participatory community approaches, such as Community-Based Participatory, emphasise the engagement and involvement of relevant stakeholders in designing interventions tailored to their needs. Key stakeholders, including healthcare professionals, researchers, clinical trial investigators, public health officials, and community health workers, TB survivors and people with TB, can play a vital role in promoting patient-centred care and engaging directly with the TB-affected community. An increased and cross-collaborative effort for the inclusion of PROs in TB research can entail their potential role in developing effective treatment regimens and promoting adherence, while maximising community engagement and improving outcomes for those affected by TB.
患者报告结局(PROs)在理解结核病(TB)对个人和社区的影响方面发挥着关键作用。尽管结核病治疗取得了进展,但传统的结局定义往往忽视了结核病患者经历的重要组成部分,导致在治疗理解上存在差异。将PROs纳入结核病科学研究有助于弥合卫生系统与人们需求和期望之间的差距。PROs可以为健康素养、自我效能感和整体幸福感等不可观察的概念提供有价值的见解,有助于对诊断、治疗和研究终点进行全面评估。参与性社区方法,如基于社区的参与式方法,强调相关利益攸关方参与设计满足其需求的干预措施。关键利益攸关方,包括医疗保健专业人员、研究人员、临床试验研究人员、公共卫生官员、社区卫生工作者、结核病幸存者和结核病患者,在促进以患者为中心的护理以及直接与受结核病影响的社区互动方面可以发挥至关重要的作用。加大并开展跨部门合作,将PROs纳入结核病研究,可以使其在制定有效的治疗方案和促进依从性方面发挥潜在作用,同时最大限度地提高社区参与度并改善结核病患者的治疗效果。