Modelo de gestión para la atención integral de pacientes con enfermedades huérfanas o raras en Colombia

Las enfermedades raras o huérfanas corresponden a aquellas con baja prevalencia en la población, y en varios países tienen una definición distinta de acuerdo con el número de pacientes que afectan en la población. La Organización Mundial de la Salud (OMS), las define como un trastorno que afecta de 650 a 1.000 personas por millón de habitantes, de las que se han identificado alrededor de 7.000. En Colombia su prevalencia es menor de 1 por cada 5.000 personas y comprenden: las enfermedades raras, las ultra-huérfanas y las olvidadas. Los pacientes con este tipo de enfermedades imponen retos a los sistemas sanitarios, pues si bien afectan a un bajo porcentaje de la población, su atención implica una alta carga económica por los costos que involucra su atención, la complejidad en su diagnóstico, tratamiento, seguimiento y rehabilitación. El abordaje de las enfermedades raras requiere un manejo interdisciplinar e intersectorial, lo que implica la organización de cada actor del sistema sanitario para su manejo a través de un modelo que abraque las dinámicas posibles entre ellos y las competencias de cada uno. Por lo anterior, y teniendo en cuenta la necesidad de formular políticas sanitarias específicas para la gestión de estas enfermedades, el presente trabajo presenta una aproximación a la formulación de un modelo de gestión para la atención integral de pacientes con enfermedades raras en Colombia. Esta investigación describe los distintos elementos y características de los modelos de gestión clínica y de las enfermedades raras a través de una revisión de literatura, en la que se incluye la descripción de los distintos actores del Sistema de Salud Colombiano, relacionados con la atención integral de estos pacientes para la documentación de un modelo de gestión integral.

Sobreuso de analgésicos en pacientes con cefaleas primarias de un centro de referencia de Medellín

Introducción: Los pacientes con cefaleas primarias están predispuestos a desarrollar una cefalea secundaria al consumo excesivo de analgésicos. En nuestro medio, la adquisición fácil de medicamentos sin fórmula médica incrementa su frecuencia de presentación. Objetivo: Describir el perfil epidemiológico, clínico y de tratamiento de los pacientes con cefaleas primarias y cefalea secundaria por sobreuso de analgésicos atendidos en el programa especial de cefaleas del Instituto Neurológico de Colombia en el periodo 2014-2015. Pacientes y métodos: estudio descriptivo, retrospectivo. Se evaluaron características de la cefalea, comorbilidades, discapacidad y patrón de consumo de medicamentos. Resultados: Se incluyeron 834 pacientes con diagnóstico de cefalea por sobreuso de analgésicos, 85.1% con migraña crónica. El 87.6% de los pacientes eran mujeres y tenían 44 años en promedio. La mitad de los pacientes tomaba analgésicos todos los días de la semana (P25-P75: 4 – 7 días); consumiendo, en promedio, tres analgésicos/día (DE: 1.9). La mayoría de pacientes presentaba un consumo elevado de analgésicos simples (95.2%), AINES (92.2%) y analgésicos combinados (89.2%); 51% consumían opiodes y sólo 14.6% consumían triptanes. Conclusión: La identificación de esta cefalea secundaria es de vital importancia para un tratamiento adecuado. El uso medicamentos de libre venta afecta el manejo óptimo de esta entidad asociada a las cefaleas primarias, principalmente la migraña.

Abuse and neglect of elderly and independence in instrumental and basic activities of daily living.

Introduction: One of the known risk factors for abuse and neglect of the elderly is the decrease in functional capacity, contributing to self care dependency of instrumental activities of daily living and basic activities of daily living (OMS, 2015). Methods: Cross-sectional study with non probabilistic sample of 333 elderly, performed in a hospital, homes and day centers for the elderly. The data collection protocol included socio-demographic data, Questions to elicit Elder Abuse (Carney, Kahan & Paris, 2003 adap. By Ferreira Alves & Sousa, 2005), scale of instrumental activities of daily living Lawton and Brody and Katz index to assess the level of independence in activities of daily living. Objectives: To evaluate the association between abuse and neglect in the elderly, instrumental activities of daily living and level of independence in activities of daily living. Results: Emotional abuse is significantly correlated with the level of independence in activities of daily living (p = 0.000), older people with less independence tend to have higher levels of emotional abuse. The total abuse is significantly correlated with the levels of independence in activities of daily living (p = 0.002), less independent elderly tend to suffer greater abuse and neglect. There were no statistically significant associations between abuse and neglect and instrumental activities of daily living. Conclusions: The less independent elderly are more vulnerable to situations of abuse and neglect, being more exposed to emotional abuse. These results point to the need for health professionals/ nurses develop prevention interventions, including strategies to support carers and early screening in less independent elderly.

Abuse and neglect of elderly and independence in instrumental and basic activities of daily living

Introduction: One of the known risk factors for abuse and neglect of the elderly is the decrease in functional capacity, contributing to self care dependency of instrumental activities of daily living and basic activities of daily living (OMS, 2015). Methods: Cross-sectional study with non probabilistic sample of 333 elderly, performed in a hospital, homes and day centers for the elderly. The data collection protocol included socio-demographic data, Questions to elicit Elder Abuse (Carney, Kahan & Paris, 2003 adap. By Ferreira Alves & Sousa, 2005), scale of instrumental activities of daily living Lawton and Brody and Katz index to assess the level of independence in activities of daily living. Objectives: To evaluate the association between abuse and neglect in the elderly, instrumental activities of daily living and level of independence in activities of daily living. Results: Emotional abuse is significantly correlated with the level of independence in activities of daily living (p = 0.000), older people with less independence tend to have higher levels of emotional abuse. The total abuse is significantly correlated with the levels of independence in activities of daily living (p = 0.002), less independent elderly tend to suffer greater abuse and neglect. There were no statistically significant associations between abuse and neglect and instrumental activities of daily living. Conclusions: The less independent elderly are more vulnerable to situations of abuse and neglect, being more exposed to emotional abuse. These results point to the need for health professionals/ nurses develop prevention interventions, including strategies to support carers and early screening in less independent elderly.

Analysis of Needs and Resources

The initial aim of the CareMan project was to develop a joint degree programme that combined and utilised the strengths of the five collaborating universities that were already involved in delivering social and health care management education. Because the project was to be implemented in collaboration between education- al institutions, the collaboration had to be based on a detailed understanding of the national and institutional specifics of each of the individual academic enti- ties. During this process it was recognised that, due to a number of regulation issues, achieving the original aim would not be possible; ultimately, following a series of analytical works, which are presented below, it was decided that a set of three master’s level modules should be developed. One of the reasons was that the Finnish law on master’s degrees at universities of applied sciences (UAS) stated that the requirement for entry to a UAS master’s programme was a bachelor degree from a UAS or equivalent, plus a minimum of three years of work experience in an appropriate field. The three years’ work experience is also required from international students. In practice this meant that the participating Finnish UASs, Lahti and HAMK, could not award a diploma for foreign students without this work experience. The other European universities do not have the work experience requirement, although some take it as a bonus for admission (FHS UK). There were also other differences in law (e.g., requirements for mini - mum standards in Social Work education at FHS UK) that could not have been overcome during the period of project realisation. Consequently, the outcome was the development of only three common educational modules, each for 10 ECTS, which were developed, delivered and assessed during the lifetime of the project. The intention was that these would be integrated into the current masters’ level provision in each of the universities

The Proces of Curriculum and Module Design

The outcome of the inductive decision -making process of the leading project management group (PMG) was the proposal to develop three modules, Human Resource Management and Knowledge Management, Quality Management and Intercultural management, each for 10 ECTS credits. As a result of the theoretical and organisational framework and analytical phase of the project, four strategies informed the development and implemen- tation of the modules: 1. Collaboration as a principle stemming from EU collaborative policy and receiving it’s expression on all implementation levels (designing the modules, modes of learning, delivering the modules, evaluation process). 2. Building on the Bologna process masters level framework to assure ap- propriate academic level of outputs. 3. Development of value -based leadership of students through transforma- tional learning in a cross -cultural setting and continual reflection of theory in practice. 4. Continual evaluation and feedback among teachers and students as a strategy to achieve a high quality programme. In the first phase of designing the modules the collaborative strategy in particular was applied, as each module was led by one university, but members from all other universities participated in the discussions and development of the mod- ules. The Bologna process masters level framework and related standards and guidelines informed the form and method of designing the modules.

Summary and Conclusion

This monograph outlines the process and results of development of a common educational programme at masters level in health and social care management, which was supported by the Erasmus Life Long Education project CareMan (Cul- ture and Care Management). The CareMan project brought together university partners actively involved in educating social and health care professionals in leadership and management at master’s level in Europe. The five partners of the consortium were Lahti University of Applied Sciences – Lahti UAS (administra- tive and academic coordinator, Finland), Charles University – CU (the Czech Republic), Edinburgh Napier University – ENU (Scotland), Hammeline University of Applied Sciences – HAMK (Finland), and University of Évora – UoE (Portugal). The objectives of the project were to achieve lower -level educational goals that included the development through education cultural and value -driven leadership, quality of care and quality management to effectively manage an integrated health and social care service. Through mapping the situation in the field and comparing curricula of all participating universities the overall aim was to develop a joint masters programme in social and healthcare management. After the detailed understanding of national and institutional specifics of each of the individual academic entities it was recognised that, due to a number of regulation issues, the original aim was not achievable. Following subsequent analytical work, it was decided to develop a set of three master’s level modules. At the end of the project it was intended that all created modules would be available virtually to the participating programmes and would contribute some added value to existing curricula. In the future these ready -to -use modules are intended to be taught in cooperation with the participating universities or as a separate module in each university. The chosen theoretical framework of the project that underpinned the devel- opment, management and evaluation of the inter -cultural educational provision relied on the combination of two learning theories – ‘cooperative collaborative and social learning’ and ’transformational’ (Mezirow, 2009). This theoretical framework helped to align with European collaborative policy and its application on all levels of implementation of the project.

Knowledge, perceptions and attitudes on the sexuality of nursing students and teachers

Introduction: The personal attitudes regarding specific aspects of sexuality are of interest to practices of personal concern, as they are to practices inserted in professional roles. General attitudes towards sexuality and sexual health were evaluated. Objectives: To describe the perceptions and attitudes of students and nursing teachers about sexuality. Methods: We used a mixed methods design with a sequential strategy: QUAN→qual of descriptive and explanatory type. 646 students and teachers participated. The Sexual Attitudes Scale (EAS) of Hendrick & Hendrick (Alferes, 1999) and Attitude Scale Address Sexual and Reproductive Health (EAFSSR) of Nemčić et al (Abreu, 2008) were used. Results: There are significant differences in the level of knowledge about sexuality depending on the sample (χ2KW (2)=18.271; p=.000): students of 1st year have lower levels. The profile of the four dimensions of EAS per sample is identical in all 3 samples, having responsibility the highest average value. In subscales EAFSSR per sample and sex there are significant diferences (p<.05) for all samples and uniform pattern was noted: females have higher median values, indicating that they have more favorable attitudes towards sexual health. Conclusions: Sexual attitudes reveal a multidimensional structure based in the female identity, that shows responsibility towards family planning and sexual education, as well as towards individual self-care regarding the body and sexual and reproductive health. An attitudinal profile by gender emerges, accentuating the polarity between male and female. The importance of the training process in nursing following the personal and social development of students is corroborated.

Efficacia del trattamento in acqua (Idrokinesiterapia) nei soggetti con diagnosi di osteoartrosi di ginocchio: revisione sistematica della letteratura

Background. One of the most diffused types of arthrities is Knee Osteoarthritis. Among symptoms found correlated to this disorder are: pain, joint stiffness, decresed muscle strenght. All these symptoms lead to a decreased function, difficulty in partcipation in physical activity, and decreased quality of life. Is Hydrotherapy increases strenght and mobility of patients for a better quality of life and society partecipation? Outcome. The aim of this Systematic Review is to verify efficacy of Hydrotherapy on upmentioned factors compared to conservative physical rehabilitation and self physical treatment. Study design. Systematc Review following The preffered Reporting Itemes For Systematic Reviews and Meta-analyses (PRISMA) statement checklist [3] Eligibility criteria. Chioice of RCTs which investigate changes in patients’ outcome who suffer from knee osteoarthritis applying Hydrotherapy treatment compared to conservative physical therapy treatment and self physical treatment. Method. Database research: PubMed, PEDro, Cochrane Central Register of Controlled Trial. Results. These reviewed studies show that Hydrotherapy induces improvements comparable with only gym treatment on muscle strenght, and step kinematic parameters, and it’s an ally of reduction of pain. Inaddition, Hydrotherapy is considered more effective physical treatment for knee orsteoarthrtis than the only conservative physical treatment and self physical treatment regarding parameters above mentioned. Conclusion. Hydrotherapy may be a valid alternative compared to only gym treatment, better than self physical treatment in pain relief and increases patients’ general physical health. Key words. Rehabilitation, Hydrotherapy, knee osteoarthritis, aquatic exercise, pain, self care, gait, balance.

Communication in Smoking Cessation and Self-management : a study at Nurse-led COPD-clinics in Primary Health Care

ABSTRACTThe general aim of this thesis was to investigate behavioral change communication at nurse-led chronic obstructive pulmonary disease (COPD) clinics in primary health care, focusing on communication in self-management and smoking cessation for patients with COPD.Designs: Observational, prospective observational and experimental designs were used.Methods: To explore and describe the structure and content of self-management education and smoking cessation communication, consultations between patients (n=30) and nurses (n=7) were videotaped and analyzed with three instruments: Consulting Map (CM), the Motivational Interviewing Treatment Integrity (MITI) scale and the Client Language Assessment in Motivational Interviewing (CLAMI). To examine the effects of structured self-management education, patients with COPD (n=52) were randomized in an intervention and a control group. Patients’ quality of life (QoL), knowledge about COPD and smoking cessation were examined with a questionnaire on knowledge about COPD and smoking habits and with St. George’s Respiratory Questionnaire, addressing QoL. Results: The findings from the videotaped consultations showed that communication about the reasons for consultation mainly concerned medical and physical problems and (to a certain extent) patients´ perceptions. Two consultations ended with shared understanding, but none of the patients received an individual treatment-plan. In the smoking cessation communication the nurses did only to a small extent evoke patients’ reasons for change, fostered collaboration and supported patients’ autonomy. The nurses provided a lot of information (42%), asked closed (21%) rather than open questions (3%), made simpler (14%) rather than complex (2%) reflections and used MI non-adherent (16%) rather than MI-adherent (5%) behavior. Most of the patients’ utterances in the communication were neutral either toward or away from smoking cessation (59%), utterances about reason (desire, ability and need) were 40%, taking steps 1% and commitment to stop smoking 0%. The number of patients who stopped smoking, and patients’ knowledge about the disease and their QoL, was increased by structured self-management education and smoking cessation in collaboration between the patient, nurse and physician and, when necessary, a physiotherapist, a dietician, an occupational therapist and/or a medical social worker.Conclusion The communication at nurse-led COPD clinics rarely involved the patients in shared understanding and responsibility and concerned patients’ fears, worries and problems only to a limited extent. The results also showed that nurses had difficulties in attaining proficiency in behavioral change communication. Structured self-management education showed positive effects on patients’ perceived QoL, on the number of patients who quit smoking and on patients’ knowledge about COPD.

Current approach to the haemodynamic management of septic shock patients in European intensive care units: a cross-sectional, self-reported questionnaire-based survey

The aim of this survey was to investigate clinicians' current approach to the haemodynamic management and resuscitation endpoints in septic shock.

Self-propelled vehicles; a practical treatise on the theory, construction, operation, care and management of all forms of automobiles,

Includes index.

Diabetes Self Management: Are Cuban Americans Receiving Quality Health Care?

Objectives: We investigated the relationship among factors predicting inadequate glucose control among 182 Cuban-American adults (Females=110, Males=72) with type 2 diabetes mellitus (CAA). Study Design: Cross-sectional study of CAA from a randomized mailing list in two counties of South Florida Methods: Fasted blood parameters and anthropometric measures were collected during the study. BMI was calculated (kg/ m2). Characteristics and diabetes care of CAA were self-reported Participants were screened by trained interviewers for heritage and diabetes status (inclusion criteria: self-reported having type 2 diabetes; age  35 years, male and female; not pregnant or lactating; no thyroid disorders; no major psychiatric disorders). Participants signed informed consent form. Statistical analyses used SPSS and included descriptive statistic, multiple logistic and ordinal logistic regression models, where all CI 95%. Results: Eighty-eight percent of CAA had BMI of ≥ 25 kg/ m2. Only 54% reported having a diet prescribed/told to schedule meals. We found CAA told to schedule meals were 3.62 more likely to plan meals (1.81, 7.26), p<0.001) and given a prescribed diet, controlling for age, corresponded with following a meal plan OR 4.43 (2.52, 7.79, p<0.001). The overall relationship for HbA1c < 8.5 to following a meal plan was OR 9.34 (2.84, 30.7. p<0.001). Conclusions: The advantage of having a medical professional prescribe a diet seems to be an important environmental support factor in this sample’s diabetes care, since obesity rates are well above the national average. Nearly half CAA are not given dietary guidance, yet our results indicate CAA may improve glycemic control by receiving dietary instructions.

Diabetes Self-management Behaviors, Medical Care, Glycemic Control, and Self-rated Health in US Men by Race/Ethnicity

Men, particularly minorities, have higher rates of diabetes as compared with their counterparts. Ongoing diabetes self-management education and support by specialists are essential components to prevent the risk of complications such as kidney disease, cardiovascular diseases, and neurological impairments. Diabetes self-management behaviors, in particular, as diet and physical activity, have been associated with glycemic control in the literature. Recommended medical care for diabetes may differ by race/ethnicity. This study examined data from the National Health and Nutrition Examination Surveys, 2007 to 2010 for men with diabetes (N = 646) from four racial/ethnic groups: Mexican Americans, other Hispanics, non-Hispanic Blacks, and non-Hispanic Whites. Men with adequate dietary fiber intake had higher odds of glycemic control (odds ratio = 4.31, confidence interval [1.82, 10.20]), independent of race/ethnicity. There were racial/ethnic differences in reporting seeing a diabetes specialist. Non-Hispanic Blacks had the highest odds of reporting ever seeing a diabetes specialist (84.9%) followed by White non-Hispanics (74.7%), whereas Hispanics reported the lowest proportions (55.2% Mexican Americans and 62.1% other Hispanics). Men seeing a diabetes specialist had the lowest odds of glycemic control (odds ratio = 0.54, confidence interval [0.30, 0.96]). The results of this study suggest that diabetes education counseling may be selectively given to patients who are not in glycemic control. These findings indicate the need for examining referral systems and quality of diabetes care. Future studies should assess the effectiveness of patient-centered medical care provided by a diabetes specialist with consideration of sociodemographics, in particular, race/ethnicity and gender.

Self-disclosure of HIV diagnosis to sexual partners by heterosexual and bisexual men: a challenge for HIV/AIDS care and prevention

This study investigated the disclosure of HIV-positive serostatus to sexual partners by heterosexual and bisexual men, selected in centers for HIV/AIDS care. In 250 interviews, we investigated disclosure of serostatus to partners, correlating disclosure to characteristics of relationships. The focus group further explored barriers to maintenance/establishment of partnerships and their association with disclosure and condom use. Fear of rejection led to isolation and distress, thus hindering disclosure to current and new partners. Disclosure requires trust and was more frequent to steady partners, to partners who were HIV-positive themselves, to female partners, and by heterosexuals, occurring less frequently with commercial sex workers. Most interviewees reported consistent condom use. Unprotected sex was more frequent with seropositive partners. Suggestions to enhance comprehensive care for HIV-positive men included stigma management, group activities, and human rights-based approaches involving professional education in care for sexual health, disclosure, and care of "persons living with HIV".