Person: Cabieses, Báltica
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Publication Enfermedades raras y trayectorias terapéuticas de pacientes: ¿qué sabemos hoy?(2022) Cabieses, Báltica; Campaña, CarlaAntecedentes y objetivos: Las enfermedades raras (ER) son un grupo de trastornos muy heterogéneos, definidos según su incidencia. Dada sus características singulares, las experiencias del paciente y la familia con ER son únicas. La investigación sobre trayectorias terapéuticas de pacientes (TTP) es importante para mejorar la atención médica, pero los estudios sobre TTP y ER son limitados. Nuestro objetivo fue desarrollar una síntesis narrativa de la evidencia científica para conocer la información disponible en la literatura sobre trayectorias terapéuticas de pacientes con enfermedades raras y contribuir como insumo a la creación de propuestas en el contexto del plan nacional y leyes específicas. Método(s) y resultados: Realizamos una revisión narrativa de literatura científica. La búsqueda se realizó en PubMed (2021), incluyendo estudios con TTP con ER, familiares o cuidadores, sin filtros. Identificamos seis temas principales en las TTP: diagnóstico, tratamiento, costo, calidad de vida, informante clave y aportes tecnológicos. Conclusiones: Los hallazgos sugieren que comprender las TTP podría ayudar a reconocer el tiempo efectivo para diagnósticos, tratamientos y capacidad de respuesta de los sistemas de salud. La perspectiva de pacientes y familias con ER debe incluirse como parte de la agenda de investigación y política.Publication "Healthcare should be the same for everyone": perceived inequities in therapeutic trajectories of adult patients with lung cancer in Chile, a qualitative study(2023) Cabieses, Báltica; Obach, Alexandra; Campaña, Carla; Vezzani, FranciscaBackground: Globally, it has been reported that different social determinants of health affect health outcomes in lung cancer (LC). Research on the therapeutic trajectories of patients (TTP) is a novel field for identifying barriers and facilitators in health. The objective of this study was to reveal perceived differences in TTP with LC in Chile according to selected social determinants of health (SDH) and the experiences of patients, health professionals, and civil society leaders. Methods: This is a qualitative paradigm, one case-study design. Online semi-structured interviews were conducted with patients with LC, health professionals, and civil society leaders. The strategies for the recruitment process included social networks, civil society organizations, health professionals, and the snowball technique. A thematic analysis was carried out. Results: Selected SDH impact LC's TTP in Chile, particularly concerning health system access, health services, information, and patient navigation experiences. The analysis of the experiences of the participants allowed us to identify barriers related to the selected SDH in three stages of the TTP: initiation, examinations, and diagnosis and treatment. Individuals with limited education, those residing outside the capital, women, and those in the public health system encountered more barriers throughout their TTP. Discussion: Study findings suggest that being a woman with low education, from the public health system, and not from the capital might represent one of the most powerful intersections for experiencing barriers to effective healthcare in LC in Chile. It is necessary to monitor the TTP from an SDH perspective to guarantee the rights of access, opportunity, quality, and financial protection.Publication Perceived barriers to reaching equity in effective access to diagnosis and treatment for women with breast cancer in Chile(2025) Campaña, Carla; Cabieses, Báltica; Obach, Alexandra; Vezzani, FranciscaGlobally, it has been reported inequities in breast cancer effective access to health care. The objective of this study was to explore perceived inequities in access to effective diagnosis and treatment in women with breast cancer according to Tanahashi model and social determinants of health model. An exploratory case study, under a qualitative paradigm, was conducted. Theoretical sampling guided the selection of diverse participant profiles, comprising breast cancer patients, healthcare professionals and a civil society leader. The strategies for the recruitment process included social networks, civil society organizations, health professionals, and the snowball technique. Online semi-structured interviews were conducted. Interviews were transcribed, anonymized, and coded using ATLAS.Ti for deductive thematic analysis. Barriers to effective healthcare access were identified in all components of Tanahashi model. Accessibility and acceptability were the components with most perceived barriers. From the determinants of health model, a woman from the public health system, with low income, under 30 or over 40, and residing in a different region from the metropolitan region faces more barriers to access to an effective healthcare. The main barriers were for the high centralisation of healthcare in Chile, not integrated health system network, misinformation to the patient, and non-humanized healthcare. The results of this study offer a comprehensive exploration of perceived barriers to effective breast cancer diagnosis and treatment in Chile, using a qualitative approach incorporating diverse perspectives. Findings underscore significant systemic challenges across Tanahashi’s model components, impacting the overall care experience. The study reveals structural inequities hindering healthcare access, reflecting global patterns in fragmented health systems.Publication Breast cancer diagnosis and staging in Chile: A nonrandomized survey-based study to assess frequency and delays(2024) Campaña, Carla; Oyarte, Marcela; Cabieses, Báltica; Obach, AlexandraIntroduction: Breast cancer progression involves physiological mechanisms such as metastasis. Delays in diagnosis and treatment increase the risk of mortality and are associated with barriers to healthcare access. In Chile, breast cancer is highly prevalent, and early diagnosis has improved, although disparities in the disease evolution persist. This study characterized diagnostic and staging tests, waiting times, and sociodemographic profiles to identify delays and inequities in care. Methods: Survey study. Using a non-probabilistic sample, a questionnaire was applied in an encrypted platform with prior informed consent. The instrument collected data on requested tests, associated times, staging, and sociodemographic characteristics. These variables were analyzed using descriptive statistics, tests of association, confidence intervals, and comparison tests using bootstrapping. Results: A sample of 263 persons was obtained. The most requested tests were biopsy (99.62%) and blood tests (80.23%). The median number of tests requested was six (Q1:4, Q3:8), with a mean of 5.87 (standard deviation: 2.24). No significant differences were observed in the percentage of persons from whom the total number of examinations were requested according to the studied variables. The day-hour-result intervals ranged from 1 to 365 days. The median day-hour-result of the biopsy was 15 days (Q1:10, Q3:30). People between 40 and 49 years old, non-residents of the capital city, belonging to income quintile I, with high school education, from the public health system, with late-stage diagnosis had higher median day-hour-result in biopsy. There was no significant difference in the number of requested tests according to staging (I and II, or III and IV). Conclusions: Biopsy in Chile is the test of choice for diagnostic confirmation in breast cancer. Other tests are requested regardless of the diagnosis stage, contrary to the recommendations of clinical guidelines. Cancer prognosis is crucial, especially in countries with greater inequalities.Publication Exploring the characteristics of cancer-centred civil society organisations in Chile: A qualitative study(2025) Roberts, Antonia; Vezzani, Francisca; Cabieses, Báltica; Obach, Alexandra; Campaña, Carla; Espinoza, ManuelBackground: In Chile, civil society organisations in health have been historically active in population health and specifically in cancer; they have had an important role in addressing patients' and families' necessities. Although they occupy a central role, there is no clarity about who they are, how they are organised, the goals that guide their performance and how they materialize social participation in health. Based on that, this study aimed to explore the characteristics of civil society organisations that work in cancer in Chile and to identify the networks they build with other actors to achieve their goals. Materials and methods: Qualitative case study using semi-structured online interviews with organisation representatives, politicians, decision-makers and academics related to cancer in Chile. Content analysis was performed, admitting emerging categories from the participants' narratives. Results: Three main profiles of organisations were identified: (i) Long-established organisations focused on influencing public policy and decision-making in cancer, (ii) Growing organisations focused on informing and supporting families and patients, (iii) Newly established organisations focused on patient well-being, such as sports activities. Relationships between groups and other actors involve perceived benefits like the growth of the organisations and funding for activities. However, perceived barriers and inequities are also identified, mainly lack of financial resources, competition between organisations and insufficient information. Discussion: The objectives of civil society organisations in cancer are diverse and reflect multiple ways of practising social participation in health. Tensions generate unequal participation and missed opportunities to promote public health in cancer in Chile. The study highlights the importance of recognising cancer social organisations as essential actors in public health. It is crucial to involve them in formulating and implementing comprehensive responses to maximise the opportunities for progress in this field.Publication Barriers to accessing formal cancer care from the perspective of informal caregivers: a qualitative study(2025) Campaña, Carla; Cabieses, Báltica; Obach, Alexandra; Vezzani, Francisca; Estay, Angela; Carrillo, DiegoBackground: Cancer is a significant public health concern in Chile, with breast and lung cancers being among the most common and deadly types. Informal caregivers provide essential healthcare procedures and physical, emotional, and financial support to cancer patients, taking on significant responsibilities they must balance with their lives. Many of these responsibilities are directly related to healthcare and patient care processes, so the healthcare system is critical to the caregiver's experience. This study aims to identify health system barriers in the healthcare of lung and breast cancer patients through the voice of informal caregivers in Chile. Methods: An exploratory qualitative case study design was used, following the COREQ criteria. Twenty informal caregivers of adult breast and lung cancer patients were recruited from different regions of Chile through snowball sampling and online outreach. Semi-structured interviews were conducted between March and June 2023. Data were analyzed using deductive thematic analysis guided by Tanahashi's effective coverage framework, which focuses on four dimensions of healthcare access: availability, accessibility, acceptability, and contact. Atlas.ti software was used for coding and thematic organization. Results: Caregivers reported significant barriers across the four dimensions: (i) availability, lack of medical equipment and home care resources, especially in public hospitals; (ii) accessibility, long wait times, fragmented care across institutions, and high out-of-pocket costs, particularly for those outside the public health insurance (FONASA) coverage; (iii) acceptability, inadequate communication from healthcare providers, with limited information on diagnosis and prognosis; (iv) contact, poor continuity of care, with a lack of coordination between healthcare providers, leading to feelings of isolation and frustration among caregivers. Conclusions: The study reveals critical gaps in Chile's healthcare system. Caregivers play an essential role in patient care but receive insufficient support from the healthcare system. Addressing the identified barriers, including improving communication, coordination, and support for caregivers, is crucial for achieving better healthcare outcomes and reducing disparities in cancer care. These findings have significant implications for policymakers, highlighting the need for reforms to support caregivers and enhance the cancer care continuum in Chile.