Patient Experience of Herpes Zoster Disease in Argentina: Validation of a Health-Related Quality of Life Conceptual Model.

OBJECTIVES: Herpes zoster (HZ) substantially affects patients' health-related quality of life (HRQoL), both in the acute phase and also in those developing postherpetic neuralgia (PHN). Building upon a previous qualitative concept elicitation study in Canada, we adopted a similar approach to further understand the patient experience of HZ/PHN in Argentina and impact on quality of life and qualitatively validate the previously published conceptual model for Argentina. METHODS: (1) Comprehensive literature review of HZ impact on HRQoL in Latin America. (2) Qualitative concept elicitation interviews with participants aged ≥50 years with acute HZ or PHN. Verbatim interview transcripts underwent thematic and content analysis related to symptoms and impacts. RESULTS: Studies from the literature (n = 6) identified 5 dimensions of HZ impact on HRQoL: pain management, disease management, family life, work, and emotional impact. A total of 10 participants were interviewed (5 acute HZ and 5 with PHN) with a mean age of 68.5 years (range 50-77 years) and 60% female. All participants reported rash and pain (some reporting a migratory element), fatigue (7 of 10), and itchiness (4 of 10). HRQoL domains most commonly affected were activities of daily living (9 of 10), emotional functioning (8 of 10), physical functioning (8 of 10), and sleep (7 of 10). Emergent themes on disease management included the need for greater public disease awareness/education, participants with PHN seeking alternative/traditional medical therapies. CONCLUSIONS: This study qualitatively validates the previously reported HRQoL conceptual framework. HZ symptoms, especially acute and chronic pain, substantially impair various aspects of HRQoL, prompting some participants to seek out alternative medical treatments.

Amyotrophic lateral sclerosis in Argentina: unveiling the burden of treatment through patient and caregiver perspectives.

PURPOSE: To examine the burden of treatment (BoT) experienced by people with Amyotrophic Lateral Sclerosis (ALS) in Argentina. METHODS: Qualitative methodological design based on semi-structured interviews. Nineteen semi-structured interviews were conducted (PwALS = 7, informal caregivers= 12). The interview guides were designed based on the literature and BoT theory. Data were analysed following a framework analysis approach. RESULTS: The research highlighted the arduous journey toward obtaining a diagnosis, marked by delays influenced by healthcare system inefficiencies, lack of disease awareness and pandemic-related anxiety. Receiving the diagnosis was a destabilising experience, triggering the need to reframe self-identity, a new reality. As the disease progressed, patients encountered significant challenges in their daily activities and basic tasks, affecting their ability to work, communicate, and manage personal care. The burden extended beyond the patients to their primary caregivers. Access to specialised care, bureaucratic complexities in securing treatment, and the financial impact of managing the disease posed substantial challenges. CONCLUSION: The findings offer valuable insights into the experiences of PwALS and their caregivers in Argentina. They underscore the need for increased disease awareness, improved access to specialised care, and enhanced support networks to alleviate the burdens PwALS and their families face.

Streamlined pathways for patients with amyotrophic lateral sclerosis in Argentina are necessary to ensure timely access to comprehensive support and interventions, laying the foundation for holistic rehabilitation.There is a need to encourage clear communication between healthcare providers and patients to establish ongoing dialogue incorporating emotional, social, and psychological aspects into rehabilitation, aligning with patient-centric approaches.There is a need to develop and implement adaptive rehabilitation strategies to sustain independence and enhance quality of life for amyotrophic lateral sclerosis patients, addressing the physical, emotional, and social implications of the disease's progression.Rehabilitation professionals should advocate for systemic improvements to ensure equitable access to therapies and support alleviate financial burdens, enabling a comprehensive, patient-focused approach to rehabilitation.

Quality improvement collaborative to optimize heart failure care in patients from a network of clinics in Argentina during the COVID-19 pandemic.

Heart failure (HF) is a major clinical and public health problem associated with significant mortality, morbidity, and health-care costs. Despite the existence of evidence-based guidelines for the optimal treatment of HF, the quality of care remains suboptimal. Our aim was to increase the use a care bundle in 50% of enrolled subjects during their hospitalization and discharge and to reduce their readmission for HF causes by 10%. We conducted an uncontrolled before-after study in eight hospitals in Argentina to evaluate the effect of a quality improvement intervention on the use of an HF care bundle in patients with HF New York Heart Association (NYHA) Class II-III. The HF bundle of care included medication, continuum of care, lifestyle habits, and predischarge examinations. Training and follow-up of multidisciplinary teams in each center were performed through learning sessions and plan-do-study-act improvement cycles. Data collectors reviewed bundle compliance in the health records of recruited patients after their hospital discharge and verified readmissions through phone calls to patients within 30-40 days after discharge. We recruited 200 patients (83 before and 127 during the intervention phase), and bundle compliance increased from 9.6% to 28.3% [odds ratio 3.71, 95% confidence interval (8.46; 1.63); P = .002]. Despite a slow improvement during the first months, bundle compliance gained momentum near the end of the intervention surpassing 80%. We observed a non-significant decreased readmission rate within 30 days of discharge due to HF in the postintervention period [8.4% vs. 5.5%, odds ratio 0.63, 95% CI (1.88; 0.21); P = .410]. Qualitative analysis showed that members of the intervention teams acknowledged the improvement of work organization and standardization of care, teamwork, shared mental model, and health record completeness as well as the utility of training fellows. Despite the challenges related to the pandemic, better care of patients with HF NYHA Class II-III was possible through simple interventions and collaborative work. Graphical abstract.

Debates parlamentarios sobre la muerte digna en Argentina: los derechos de los pacientes terminales en la agenda legislativa, 1996-2012 / Parliamentary debates on death with dignity in Argentina: the rights of terminal patients on the legislative agenda, 1996-2012

Resumen: El artículo examina la producción legislativa sobre derechos de los pacientes terminales en Argentina en dos momentos: los primeros intentos de regular los derechos en el final de la vida (1996) y la sanción de la ley de "muerte digna" en el Congreso Nacional (2011-2012). El análisis comparativo permite observar variaciones en torno a las personas y situaciones incluidas en la legislación, la forma en que se conceptualiza la autonomía y las intervenciones que se considera legítimo rechazar. El contexto político y la forma diferencial en que la "muerte digna" ingresó en la agenda legislativa en cada periodo determinaron la construcción pública del problema y con ello los alcances y el resultado de los debates.

Abstract: This article examines the regulation on terminal patients' rights in Argentina at two points in time: the first attempts to regulate end-of-life rights (1996), and the "death with dignity" law passed by the National Congress (2011-2012). Comparative analysis allows us to observe variations among the individuals and situations included in the legislation, as well as in the conceptualization of autonomy and the interventions that is considered lawful refuse. The political context and the differential way that "death with dignity" entered the legislative agenda in each period determined the public's construction of the problem and thus the extent and result of the debates.

Parliamentary debates on death with dignity in Argentina: the rights of terminal patients on the legislative agenda, 1996-2012. / Debates parlamentarios sobre la muerte digna en Argentina: los derechos de los pacientes terminales en la agenda legislativa, 1996-2012.

This article examines the regulation on terminal patients' rights in Argentina at two points in time: the first attempts to regulate end-of-life rights (1996), and the "death with dignity" law passed by the National Congress (2011-2012). Comparative analysis allows us to observe variations among the individuals and situations included in the legislation, as well as in the conceptualization of autonomy and the interventions that is considered lawful refuse. The political context and the differential way that "death with dignity" entered the legislative agenda in each period determined the public's construction of the problem and thus the extent and result of the debates.

El artículo examina la producción legislativa sobre derechos de los pacientes terminales en Argentina en dos momentos: los primeros intentos de regular los derechos en el final de la vida (1996) y la sanción de la ley de "muerte digna" en el Congreso Nacional (2011-2012). El análisis comparativo permite observar variaciones en torno a las personas y situaciones incluidas en la legislación, la forma en que se conceptualiza la autonomía y las intervenciones que se considera legítimo rechazar. El contexto político y la forma diferencial en que la "muerte digna" ingresó en la agenda legislativa en cada periodo determinaron la construcción pública del problema y con ello los alcances y el resultado de los debates.

Debates parlamentarios sobre la muerte digna en Argentina: los derechos de los pacientes terminales en la agenda legislativa, 1996-2012 / Parliamentary debates on death with dignity in Argentina: the rights of terminal patients on the legislative agenda, 1996-2012

El artículo examina la producción legislativa sobre derechos de los pacientes terminales en Argentina en dos momentos: los primeros intentos de regular los derechos en el final de la vida (1996) y la sanción de la ley de “muerte digna” en el Congreso Nacional (2011-2012). El análisis comparativo permite observar variaciones en torno a las personas y situaciones incluidas en la legislación, la forma en que se conceptualiza la autonomía y las intervenciones que se considera legítimo rechazar. El contexto político y la forma diferencial en que la “muerte digna” ingresó en la agenda legislativa en cada periodo determinaron la construcción pública del problema y con ello los alcances y el resultado de los debates.(AU)