Consensus Statement on Standard of Care for Congenital Myopathies

Recent progress in scientific research has facilitated accurate genetic and neuropathological diagnosis of congenital myopathies. However, given their relatively low incidence, congenital myopathies remain unfamiliar to the majority of care providers, and the levels of patient care are extremely variable. This consensus statement aims to provide care guidelines for congenital myopathies. The International Standard of Care Committee for Congenital Myopathies worked through frequent e-mail correspondences, periodic conference calls, 2 rounds of online surveys, and a 3-day workshop to achieve a consensus for diagnostic and clinical care recommendations. The committee includes 59 members from 10 medical disciplines. They are organized into 5 working groups: genetics/diagnosis, neurology, pulmonology, gastroenterology/nutrition/speech/oral care, and orthopedics/rehabilitation. In each care area the authors summarize the committee's recommendations for symptom assessments and therapeutic interventions. It is the committee's goal that through these recommendations, patients with congenital myopathies will receive optimal care and improve their disease outcome.

Continuity of Dynamical Structures for Nonautonomous Evolution Equations Under Singular Perturbations

In this paper we study the continuity of invariant sets for nonautonomous infinite-dimensional dynamical systems under singular perturbations. We extend the existing results on lower-semicontinuity of attractors of autonomous and nonautonomous dynamical systems. This is accomplished through a detailed analysis of the structure of the invariant sets and its behavior under perturbation. We prove that a bounded hyperbolic global solutions persists under singular perturbations and that their nonlinear unstable manifold behave continuously. To accomplish this, we need to establish results on roughness of exponential dichotomies under these singular perturbations. Our results imply that, if the limiting pullback attractor of a nonautonomous dynamical system is the closure of a countable union of unstable manifolds of global bounded hyperbolic solutions, then it behaves continuously (upper and lower) under singular perturbations.

Prevalence of adults with type 1 diabetes who meet the goals of care in daily clinical practice: A nationwide multicenter study in Brazil

Objective: To determine the prevalence of patients with type 1 diabetes mellitus who meet the glycemic and cardiovascular (CV) risk factors goals and the frequency of screening for diabetic complications in Brazil according to the American Diabetes Association guidelines. Research design and methods: This was a cross-sectional, multicenter study conducted between December 2008 and December 2010 in 28 public clinics in 20 Brazilian cities. Data were obtained from 1774 adult patients (56.8% females, 57.2% Caucasians) aged 30.3 +/- 9.8 years with diabetes duration of 14.3 +/- 8.8 years. Results: Systolic blood pressure was at goal in 40.3% and diastolic blood pressure was at goal in 26.6% of hypertensive patients. LDL cholesterol and HbA1c were at the goal in 45.2% and 13.2% of the patients, respectively. Overweight was presented in 25.6% and obesity in 6.9%. Among those with more than 5 years of disease, screening for retinopathy was performed in the preceding year in 70.1%. Nephropathy and feet complications were screened in 63.1% and 65.1%, respectively. Conclusions: The majority of patients did not meet metabolic control goals and a substantial proportion was not screened for diabetic complications. These issues may increase the risk of chronic complications and negatively impact public health. (C) 2012 Elsevier Ireland Ltd. All rights reserved.

Continuity of Lyapunov functions and of energy level for generalized gradient semigroup

The global attractor of a gradient-like semigroup has a Morse decomposition. Associated to this Morse decomposition there is a Lyapunov function (differentiable along solutions)-defined on the whole phase space- which proves relevant information on the structure of the attractor. In this paper we prove the continuity of these Lyapunov functions under perturbation. On the other hand, the attractor of a gradient-like semigroup also has an energy level decomposition which is again a Morse decomposition but with a total order between any two components. We claim that, from a dynamical point of view, this is the optimal decomposition of a global attractor; that is, if we start from the finest Morse decomposition, the energy level decomposition is the coarsest Morse decomposition that still produces a Lyapunov function which gives the same information about the structure of the attractor. We also establish sufficient conditions which ensure the stability of this kind of decomposition under perturbation. In particular, if connections between different isolated invariant sets inside the attractor remain under perturbation, we show the continuity of the energy level Morse decomposition. The class of Morse-Smale systems illustrates our results.

Glucose Control in Acute Myocardial Infarction: A Pilot Randomized Study Controlled by Continuous Glucose Monitoring System Comparing the Use of Insulin Glargine with Standard of Care

Background: This pilot study aimed to verify if glycemic control can be achieved in type 2 diabetes patients after acute myocardial infarction (AMI), using insulin glargine (iGlar) associated with regular insulin (iReg), compared with the standard intensive care unit protocol, which uses continuous insulin intravenous delivery followed by NPH insulin and iReg (St. Care). Patients and Methods: Patients (n = 20) within 24 h of AMI were randomized to iGlar or St. Care. Therapy was guided exclusively by capillary blood glucose (CBG), but glucometric parameters were also analyzed by blinded continuous glucose monitoring system (CGMS). Results: Mean glycemia was 141 +/- 39 mg/dL for St. Care and 132 +/- 42 mg/dL for iGlar by CBG or 138 +/- 35 mg/dL for St. Care and 129 +/- 34 mg/dL for iGlar by CGMS. Percentage of time in range (80-180 mg/dL) by CGMS was 73 +/- 18% for iGlar and 77 +/- 11% for St. Care. No severe hypoglycemia (<= 40 mg/dL) was detected by CBG, but CGMS indicated 11 (St. Care) and seven (iGlar) excursions in four subjects from each group, mostly in sulfonylurea users (six of eight patients). Conclusions: This pilot study suggests that equivalent glycemic control without increase in severe hyperglycemia may be achieved using iGlar with background iReg. Data outputs were controlled by both CBG and CGMS measurements in a real-life setting to ensure reliability. Based on CGMS measurements, there were significant numbers of glycemic excursions outside of the target range. However, this was not detected by CBG. In addition, the data indicate that previous use of sulfonylurea may be a potential major risk factor for severe hypoglycemia irrespective of the type of insulin treatment.

The coordination of care for tuberculosis control

This descriptive epidemiological study analyzed the coordination of tuberculosis (TB) patient care in primary healthcare services according to 23 patients, 16 professionals, and 17 administrators from Ribeirao Preto, Sao Paulo, using an instrument adapted to evaluate TB. According to the informants, the coordination of healthcare provided to patients under the treatment of the Tuberculosis Control Program team was considered satisfactory; however, when there is a need to refer the patient to other care units there are weak points in the coordination of healthcare, which include: interruption of communication flow; and patients' incipient participation in the care process, with a need to increase the sense of responsibility for patient care and encourage patients to become active agents in the process.

Imaginative construction of care: the nursing professional experience in a remote care service

The direction of care delivery goes from the action to the being; a process built from professional experience, which gains special characteristics when the service is delivered by telephone. The goal of this research was to understand the interaction between professionals and users in a remote care service; to do so, a research is presented, using Grounded Theory and Symbolic Interactionism as theoretical references. Data were collected through eight interviews with professionals who deliver care by telephone. The theoretical understanding permitted the creation of the theoretical model of the Imaginative Construction of Care, which shows the interaction processes the professional experiences when delivering care by telephone. In this model, individual and social facts are added, showing the link between the concepts, with special emphasis on uncertainty, sensitivity and professional responsibility, as essential components of this experience.

Living Invisible: HTLV-1-Infected Persons and the Lack of Care in Public Health

Introduction: Human T-cell lymphotropic virus type 1 (HTLV-1) infection is intractable and endemic in many countries. Although a few individuals have severe symptoms, most patients remain asymptomatic throughout their lives and their infections may be unknown to many health professionals. HTLV-1 can be considered a neglected public health problem and there are not many studies specifically on patients' needs and emotional experiences. Objective: To better understand how women and men living with HTLV-1 experience the disease and what issues exist in their healthcare processes. Methods: A qualitative study using participant observation and life story interview methods was conducted with 13 symptomatic and asymptomatic patients, at the outpatient clinic of the Emilio Ribas Infectious Diseases Institute, in Sao Paulo, Brazil. Results and Discussion: The interviewees stated that HTLV-1 is a largely unknown infection to society and health professionals. Counseling is rare, but when it occurs, focuses on the low probability of developing HTLV-1 related diseases without adequately addressing the risk of infection transmission or reproductive decisions. The diagnosis of HTLV-1 can remain a stigmatized secret as patients deny their situations. As a consequence, the disease remains invisible and there are potentially negative implications for patient self-care and the identification of infected relatives. This perception seems to be shared by some health professionals who do not appear to understand the importance of preventing new infections. Conclusions: Patients and medical staff referred that the main focus was the illness risk, but not the identification of infected relatives to prevent new infections. This biomedical model of care makes prevention difficult, contributes to the lack of care in public health for HTLV-1, and further perpetuates the infection among populations. Thus, HTLV-1 patients experience an "invisibility" of their complex demands and feel that their rights as citizens are ignored.

Burden of care and its impact on health-related quality of life of caregivers of individuals with spinal cord injury

Objective: to analyze the impact and burden of care on the Health-Related Quality of Life (HRQOL) of caregivers of individuals with a spinal cord injury (SCI). Method: cross-sectional observational study carried out by reviewing medical records and applying questionnaires. The scale Short Form 36 (SF-36) was used to assess HRQOL and the Caregiver Burden Scale (CBScale) for care burden. Results were analyzed quantitatively. Most patients with SCIs were male, aged 35.4 years old on average, with a predominance of thoracic injuries followed by cervical injuries. Most caregivers were female aged 44.8 years old on average. Results: tetraplegia and secondary complications stand out among the clinical characteristics that contributed to greater care burden and worse HRQOL. Association between care burden with HRQOL revealed that the greater the burden the worse the HRQOL. Conclusion: Preventing care burden through strategies that prepare patients for hospital discharge, integrating the support network, and enabling access to health care services are interventions that could minimize the effects arising from care burden and contribute to improving HRQOL.

Equity and women's health services for contraception, abortion and childbirth in Brazil

This paper addresses equity in health and health care in Brazil, examining unjust disparities between women and men, and between women from different social strata, with a focus on services for contraception, abortion and pregnancy. In 2010 women's life expectancy was 77.6 years, men's was 69.7 years. Women are two-thirds of public hospital services users and assess their health status less positively than men. The total fertility rate was 1.8 in 2011, and contraceptive prevalence has been high among women at all income levels. The proportion of sterilizations has decreased; lower-income women are more frequently sterilized. Abortions are mostly illegal; women with more money have better access to safe abortions in private clinics. Poorer women generally self-induce abortion with misoprostol, seeking treatment of complications from public clinics. Institutional violence on the part of health professionals is reported by half of women receiving abortion care and a quarter of women during childbirth. Maternity care is virtually universal. The public sector has fewer caesarean sections, fewer low birth weight babies, and more rooming-in, but excessive episiotomies and inductions. Privacy, continuity of care and companionship during birth are more common in the private sector. To achieve equity, the health system must go beyond universal, unregulated access to technology, and move towards safe, effective and transparent care. (C) 2012 Reproductive Health Matters

Private and Public Dental Care in the City of Sao Paulo in the First Decade of the XXI Century

Two concomitant movements occur in the first decade of the XXI century within the private and public dental services in Brazil: the entrance of oral health on the agenda of political priorities of the federal government and the vigorous growth of additional dental care. We analyzed the occurrence of these phenomena in the city of Sao Paulo, by seeking information in official documents and electronic databases in the Municipality of Sao Paulo, the Ministry of Health and National Health Agency (ANS), and also in scientific literature. During the studied period - January 2000 to December 2009 - and with basis on indicators such as coverage of First Consultation Program and Dental coverage Population Potential, percentages were found that characterize low public assistance and a situation far short of the constitutional principle of universal access to dental care. The growing number of beneficiaries of additional services through exclusively dental coverage insurance plans and other types of private insurance plans in the same period was significant, accounting for a major expansion of population coverage in this mode of care. It was found that, compared to the overall national framework, the city of Sao Paulo offers poor access to public dental care, with reduced supply of services to adults and aged people. Furthermore, considering the limitations of market additional services to provide dental care to all Brazilians, it reinforces the need for continuity and expansion of Brasil Sorridente, which is the programmatic expression of the National Oral Health Politics.

THE CARE NEEDS OF WOMEN INFECTED WITH THE HUMAN PAPILLOMA VIRUS: A COMPREHENSIVE APPROACH

This study is founded on the phenomenology of Martin Heidegger, with the objective to understand the care needs of women infected with the human papilloma virus. Participants were fourteen women who had been diagnosed with this infection. The guiding questions were: What is it like to have this diagnosis? Tell me your experience, from when you received your diagnosis until today. What has your health care been like? The questions revealed the theme - seeking care as solicitude - which showed the importance of the support of family and friends. The presence of the infection as the cause of marital conflicts and separation was another highlighted aspect. The statements showed that there was a sense of resignation after an unsuccessful attempt to find accurate and clear information in order to make assertive decisions. Health interventions for infected women must overcome the traditional models of care, including interventions for health promotion and prevention, with trained professionals who are sensitive to the subjective dimension.

THE KNOWLEDGE ABOUT COMMUNICATION STRATEGIES WHEN TAKING CARE OF THE EMOTIONAL DIMENSION IN PALLIATIVE CARE

The aim of this qualitative study was to investigate existing knowledge and the use of communication strategies in emotional care for patients receiving palliative care in Brazil. It was performed from August, 2008, to July, 2009, with 303 health professionals who worked or had frequent contact with patients receiving palliative care, using a questionnaire. Data was submitted to descriptive and analytical statistical treatment. The professionals reported not knowing about communication strategies, showing a significant difference (p-value 0.0011) in comparing subjects with and without previous training in palliative care, showing that those who had received proper training know/use more communication strategies when providing care for their patients on an emotional level. The strategies most often cited were: careful listening, verbal reaffirmation of care, using open questions, and affective touch. We conclude that there is little knowledge and poor use of communication strategies among health professionals in towards the emotional care of patients receiving palliative care.

HEALTH EDUCATION IN THE CARE TO CLIENTS OF THE BLOOD GLUCOSE SELF-MONITORING PROGRAM

This article reports, in a systemized and analytical way, the experience of an Outreach Program in the period between 2010 and 2011. The study focused on health education interventions as strategies to improve the adherence of individuals with insulin- dependent diabetes mellitus (IDDM), clients of a blood glucose self-Monitoring program. In addition, we intended to contribute to the reorganization of the program's working processes in the unit. Health education strategies were used in both educational groups and home visits, thus permitting the provision of care that was more individualized. Data regarding the clients were organized on a spreadsheet and in files for the Family Health teams, which made it easier to identify the patients, including those who were absent, helping to decentralize the care. By using health education strategies, we intended to contribute to a more comprehensive and emancipatory care of the clients, aimed at a continuous reflection of the workers regarding their practices.

Family Health Support Centers: challenges and opportunities from the perspective of primary care professionals in the city of Sao Paulo, Brazil

Family Health Support Centers (NASF) were created in Brazil to increase the case-resolution capacity of primary healthcare. Prior to their implementation in the West Side of the city of Sao Paulo, Brazil, a series of workshops were held for primary healthcare professionals to prepare a proposal for such centers. Hermeneutic analysis was used to study the transcribed material. The thematic categories were: role, constitution, and functioning of the NASF, relationship with family health teams, and interdisciplinarity. The participants' expected the NASF to be an empowering device for comprehensiveness of care, intervening in an existing culture of unnecessary referrals while fostering linkage with other levels of care. The participants also expected the NASF to contribute to the discussion on health professionals' training and stimulating reflection with policy-makers on health indicators based exclusively on the number of consultations. These indicators fail to reflect the impact on the services' activities and the quality of care offered to the population in the coverage area.