Dominant logics at the policy making and services organization that affect the access to comprehensive rehabilitation

Introduction: The health sector reform in Colombia, generated inequities in access to services, including rehabilitation; poor identification of population needs and low sectorial response to their problems. Metodology: An exploratory, descriptive-interpretative qualitative study was carried out. Individual semi-structured interviews and focus group were conducted to policy makers, providers, rehabilitation professionals, professors, social organizations, persons with disabilities and caregivers. Results: The absence of a rights approach, targeting and the model of health insurance, as dominant logics policy stands. There is a reductionist view of rehabilitation and services organization models with low response to the needs of people with disabilities. Conclusion: The need to reconceptualize access to services arises; rehabilitation is claimed as a right that demands redesign of services and organization models

Natural History of MYH7-Related Dilated Cardiomyopathy

BACKGROUND Variants in myosin heavy chain 7 (MYH7) are responsible for disease in 1% to 5% of patients with dilated cardiomyopathy (DCM); however, the clinical characteristics and natural history of MYH7-related DCM are poorly described. OBJECTIVES We sought to determine the phenotype and prognosis of MYH7-related DCM. We also evaluated the influence of variant location on phenotypic expression. METHODS We studied clinical data from 147 individuals with DCM-causing MYH7 variants (47.6% female; 35.6 +/- 19.2 years) recruited from 29 international centers. RESULTS At initial evaluation, 106 (72.1%) patients had DCM (left ventricular ejection fraction: 34.5% +/- 11.7%). Median follow-up was 4.5 years (IQR: 1.7-8.0 years), and 23.7% of carriers who were initially phenotype-negative developed DCM. Phenotypic expression by 40 and 60 years was 46% and 88%, respectively, with 18 patients (16%) first diagnosed at <18 years of age. Thirty-six percent of patients with DCM met imaging criteria for LV noncompaction. During follow-up, 28% showed left ventricular reverse remodeling. Incidence of adverse cardiac events among patients with DCM at 5 years was 11.6%, with 5 (4.6%) deaths caused by end-stage heart failure (ESHF) and 5 patients (4.6%) requiring heart transplantation. The major ventricular arrhythmia rate was low (1.0% and 2.1% at 5 years in patients with DCM and in those with LVEF of <= 35%, respectively). ESHF and major ventricular arrhythmia were significantly lower compared with LMNA-related DCM and similar to DCM caused by TTN truncating variants. CONCLUSIONS MYH7-related DCM is characterized by early age of onset, high phenotypic expression, low left ventricular reverse remodeling, and frequent progression to ESHF. Heart failure complications predominate over ventricular arrhythmias, which are rare. (C) 2022 The Authors. Published by Elsevier on behalf of the American College of Cardiology Foundation

Lógicas dominantes en la formulación de políticas y organización de servicios que inciden en el acceso a la rehabilitación integral

"Introduction: The health sector reform in Colombia, generated inequities in access to services, including rehabilitation; poor identification of population needs and low sectorial response to their problems. Metodology: An exploratory, descriptive-interpretative qualitative study was carried out. Individual semi-structured interviews and focus group were conducted to policy makers, providers, rehabilitation professionals, professors, social organizations, persons with disabilities and caregivers. Results: The absence of a rights approach, targeting and the model of health insurance, as dominant logics policy stands. There is a reductionist view of rehabilitation and services organization models with low response to the needs of people with disabilities. Conclusion: The need to reconceptualize access to services arises; rehabilitation is claimed as a right that demands redesign of services and organization models.

Análisis cualitativo del concepto y praxis de rehabilitación integral percibido por distintos actores involucrados

Introduction: Comprehensive rehabilitation is a difficult concept since it is the result of historical evolution. Objective: To present the findings of the study “Access to comprehensive rehabilitation services in Colombia: an approach from the concepts and practices of different social actors”, and to describe the perception of comprehensive rehabilitation based on the opinions of different actors from a comprehensive perspective of disability. Material and methods: A descriptive and exploratory, qualitative study was conducted, taking into account multiple sources of evidence to identify the perceptions of actors responsible for formulating and implementing public policies (PP), academicians (A), professionals (P), representatives of social organizations (SO), service managers (SM), service managers and professionals in inclusive education (IE), persons with disabilities (PWD) and caregivers (C), involved in comprehensive rehabilitation in a Colombian city. 18 interviews with actors were conducted; six focus groups were developed. For data analysis, the Atlas ti® software, the agreement between judges and the analysis of narratives were considered. Results: Comprehensive rehabilitation is perceived differently by the actors, and three conceptions are relevant: it is a result of a functional rehabilitation process; it is a right, and it is also a guarantor of social inclusion. Conclusions: While there is diversity and dispersion in opinions on comprehensive rehabilitation, it will be difficult to conceive, implement, evaluate and actively participate in this process. Consequently, access barriers will increase and it will be far from understood as a right exercised from an integral vision of the human being. With this in mind, implications for academia, service providers and public policies are set. © 2016, Universidad Nacional de Colombia. All rights reserved

Análisis cualitativo del concepto y praxis de rehabilitación integral percibido por distintos actores involucrados

Introduction: Comprehensive rehabilitation is a difficult concept since it is the result of historical evolution. Objective: To present the findings of the study “Access to comprehensive rehabilitation services in Colombia: an approach from the concepts and practices of different social actors”, and to describe the perception of comprehensive rehabilitation based on the opinions of different actors from a comprehensive perspective of disability. Material and methods: A descriptive and exploratory, qualitative study was conducted, taking into account multiple sources of evidence to identify the perceptions of actors responsible for formulating and implementing public policies (PP), academicians (A), professionals (P), representatives of social organizations (SO), service managers (SM), service managers and professionals in inclusive education (IE), persons with disabilities (PWD) and caregivers (C), involved in comprehensive rehabilitation in a Colombian city. 18 interviews with actors were conducted; six focus groups were developed. For data analysis, the Atlas ti® software, the agreement between judges and the analysis of narratives were considered. Results: Comprehensive rehabilitation is perceived differently by the actors, and three conceptions are relevant: it is a result of a functional rehabilitation process; it is a right, and it is also a guarantor of social inclusion. Conclusions: While there is diversity and dispersion in opinions on comprehensive rehabilitation, it will be difficult to conceive, implement, evaluate and actively participate in this process. Consequently, access barriers will increase and it will be far from understood as a right exercised from an integral vision of the human being. With this in mind, implications for academia, service providers and public policies are set. © 2016, Universidad Nacional de Colombia. All rights reserved