Fatores associados e preditores de quedas em idosos domiciliados de acordo com a Classificação Internacional da Funcionalidade, Incapacidade e Saúde

Objetivo geral da pesquisa foi identificar os fatores associados e preditivos de quedas em idosos domiciliados em uma cidade do Rio Grande do Sul, Brasil, considerando as características sociodemográficas e epidemiológicas e utilizando-se de fatores ambientais da Classificação Internacional de Funcionalidade, Incapacidade e Saúde (CIF). Objetivos específicos: identificar as características sociodemográficas e epidemiológicas de idosos domiciliados em uma cidade do Rio Grande do Sul, Brasil; descrever os fatores sociodemográficos e epidemiológicos que influenciam nas quedas em idosos domiciliados; Relacionar os fatores ambientais da Classificação Internacional de Funcionalidade, Incapacidade e Saúde em idosos domiciliados com riscos de quedas. Pesquisa epidemiológica transversal, ocorrida de junho a julho de 2013, com 167 idosos das áreas de abrangência de uma unidade básica de saúde. Critérios de inclusão na pesquisa: ambos os sexos, cadastrados e com residência fixa nas áreas de abrangência de uma unidade básica de saúde. Critérios de exclusão: idosos com alterações cognitivas. Utilizou-se entrevista estruturada com três etapas: levantamento das características dos idosos investigados; questões relacionadas às quedas; informações sobre os fatores ambientais da Classificação Internacional de Funcionalidade, Incapacidade e Saúde. Os dados foram agrupados para tratamento estatístico/descritivo. A média das idades 71 anos, com desvio padrão de 7,1. A maioria dos idosos era do sexo feminino, casados, com escolaridade de quatro e oito anos, residindo com filhos e companheiro, aposentados e com renda de um salário mínimo. As doenças mais prevalentes foram circulatórias, osteomusculares, e endócrinas e os idosos apresentaram pelo menos uma comorbidade. Dos 167 idosos, 65 caíram nos últimos doze meses, no ambiente domiciliar, com prevalência em: banheiro, cozinha e na rua, sendo as calçadas as mais destacadas. A maior proporção de permanência no chão foi de dez minutos, e a maioria dos idosos, após as quedas, não procuraram os serviços de saúde. Como tratamento para as quedas, obteve-se o não cirúrgico. Quanto à Classificação Internacional da Funcionalidade, Incapacidade e Saúde, houve destaque para o uso de medicações como fator influente nas quedas dos idosos domiciliados. Percebe-se a importância de avaliação constante por parte dos profissionais de saúde sobre os idosos caidores e não-caidores, no sentido de identificar os fatores de riscos intrínsecos e extrínsecos para implementar estratégias de prevenção que compreendam reabilitação da força muscular, equilíbrio e capacidade funcional, redução da polifarmácia, educação para o autocuidado e um olhar do enfermeiro voltado para os períodos e locais de maior incidência de quedas, melhorando desta forma a qualidade de vida dos idosos residentes em diferentes contextos. A pesquisa traz como contribuição social um re-olhar acerca do redimensionamento do cuidado à pessoa idosa que teve queda no próprio ambiente, a partir da Classificação Internacional de Funcionalidade, Incapacidade e Saúde.

A gestão da pessoa com hipertensão arterial na unidade móvel de saúde

Enquadramento: A gestão da doença, designadamente da hipertensão arterial (HTA) através do apoio à auto-gestão, aconselhamento motivacional, acesso à informação resultam em maior adesão terapêutica. Objetivos: Identificar os fatores que determinam a adesão ao tratamento na pessoa com HTA numa amostra comunitária. Metodologia: Estudo transversal, descritivo-correlacional, com amostra de 235 hipertensos (63,8% do género feminino), idade média 75 ± 8,14 anos, 62,6% casados e a maioria com o 1.º ciclo de escolaridade. Recorremos ao questionário com variáveis sociodemográficas, dietéticas, clínicas, motivacionais, relacionadas com os profissionais e serviços de saúde, Escala de Apgar Familiar, Questionário de Dependência Alcoólica, Questionário Internacional de Atividade Física, Questionário de Determinação da Saúde Nutricional, Escala de Autocuidado com a Hipertensão, Questionário de Crenças Sobre a Doença, Escala de Crenças Acerca dos Medicamentos, Escala de Satisfação dos Utentes com os Cuidados de Enfermagem na Unidade Móvel de Saúde, Questionário abreviado da Perceção do Cliente sobre o Ambiente Terapêutico, Questionário de Autorregulação, Escala de Competência Percebida e Escala de Medida de Adesão aos Tratamentos para colheita de dados. Resultados: A pressão arterial estava controlada em 34,5% da amostra, 28,2% homens e 38% mulheres. A MAT revelou um mínimo de 3,86 e um máximo de 6 com uma média de 5,66±0,49. As variáveis preditoras da adesão foram: controlo pessoal (p=0,005), identidade (p=0,000), ambiente terapêutico (p=0,001), alimentação geral (p=0,041), atividade física (p=0,007) e toma de medicamentos (p=0,000). Conclusões: Compreender os fatores envolvidos na gestão do tratamento permite perceber como podem os enfermeiros contribuir para melhorar a adesão ao regime terapêutico. Palavras-chave: Hipertensão arterial, gestão da doença crónica, adesão ao tratamento e adultos.

Development of the Andalusian Registry of Patients Receiving Community Case Management, for the follow-up of people with complex chronic diseases.

Background: Complex chronic diseases are a challenge for the current configuration of Health services. Case management is a service frequently provided for people with chronic conditions and despite its effectiveness in many outcomes, such as mortality or readmissions, uncertainty remains about the most effective form of team organization, structures, and the nature of the interventions. Many processes and outcomes of case management for people with complex chronic conditions cannot be addressed with the information provided by electronic clinical records. Registries are frequently used to deal with this weakness. The aim of this study was to generate a registry-based information system of patients receiving case management to identify their clinical characteristics, their context of care, events identified during their follow-up, interventions developed by case managers, and services used. Methods and design: The study was divided into three phases, covering the detection of information needs, the design and its implementation in the healthcare system, using literature review and expert consensus methods to select variables that would be included in the registry. Objective: To describe the essential characteristics of the provision of ca re lo people who receive case management (structure, process and outcomes), with special emphasis on those with complex chronic diseases. Study population: Patients from any District of Primary Care, who initiate the utilization of case management services, to avoid information bias that may occur when including subjects who have already been received the service, and whose outcomes and characteristics could not be properly collected. Results: A total of 102 variables representing structure, processes and outcomes of case management were selected for their inclusion in the registry after the consensus phase. Total sample was composed of 427 patients, of which 211 (49.4%) were women and 216 (50.6%) were men. The average functional level (Barthel lndex) was 36.18 (SD 29.02), cognitive function (Pfeiffer) showed an average of 4.37 {SD 6.57), Chat1son Comorbidity lndex, obtained a mean of 3.03 (SD 2.7) and Social Support (Duke lndex) was 34.2 % (SD 17.57). More than half of patients include in the Registry, correspond lo immobilized or transitional care for patients discharged from hospital (66.5 %). The patient's educational level was low or very low (50.4%). Caregivers overstrain (Caregiver stress index), obtained an average value of 6.09% (SD 3.53). Only 1.2 % of patients had declared their advanced directives, 58.6 had not defined the tutelage and the vast majority lived at home 98.8 %. Regarding the major events recorded at RANGE Registry, 25.8 % of the selected patients died in the first three months, 8.2 % suffered a hospital admission at least once time, 2.3%, two times, and 1.2% three times, 7.5% suffered a fall, 8.7% had pressure ulcer, 4.7% had problems with medication, and 3.3 % were institutionalized. Stroke is the more prevalent health problem recorded (25.1%), followed by hypertension (11.1%) and COPD (11.1%). Patients registered by NCMs had as main processes diabetes (16.8%) and dementia (11.3 %). The most frequent nursing diagnoses referred to the self-care deficit in various activities of daily living. Regarding to nursing interventions, described by the Nursing Intervention Classification (NIC), dementia management is the most used intervention, followed by mutual goal setting, caregiver and emotional support. Conclusions: The patient profile who receive case management services is a chronic complex patient with severe dependence, cognitive impairment, normal social support, low educational level, health problems such as stroke, hypertension or COPD, diabetes or dementia, and has an informal caregiver. At the first follow up, mortality was 19.2%, and a discrete rate of readmissions and falls.

Assessment of the elderly’s functional ability to manage theirmedication: a systematic literature review

Background The evaluation of the elderly’s ability to manage medication through the use of a validated tool can be a significant step in identifying inabilities and needs, with the objective of increasing their self-care skills, and promoting successful aging. Aim of the review To identify studies assessing the elderly’s functional ability to manage their own medication. Method For the search strategy, the PICO method was used: P—Population(elderly), I—Instruments (tools for assessing medication management ability), C—Context (community) and O—Outcomes (functional ability to manage medication). Thefinal search query was run in MEDLINE/PubMed,CINAHL Plus, ISI Web of Science and Scopus. The whole process was developed according to the PRISMA statement. Results The search retrieved 8051 records. In each screening stage, the selection criteria were applied to eliminate records where at least one of the exclusion criteria was verified. At the end of this selection, we obtained a total of 18 papers (17 studies). The results allow the conclusion to be drawn that studies use several different instruments, most of them not validated. The authors agree that medication management abilities decrease as cognitive impairment increases, even if a lot of studies assess only the physical dimension. DRUGS was the instrument most often used. Conclusion Older adults’ ability to manage their medication should be assessed using tools specifically built and validate for the purpose. DRUGS (which uses the real regimen taken by the elderly) was the most widely used assessment instrument in the screened studies.

Improving care for people with long term conditions: 'at a glance' information sheets for healthcare professionals

The Department has produced a series of information sheets for doctors,nurses, those delivering personal health budgets, allied health professionals, health trainers and anyone supporting individuals with long term conditions. The information sheets cover a range of topics including care planning, care co-ordination, managing need and assessment of risk, motivating people to self care, goal setting and action planning and end of life care.Download information sheet 1: Personalised care planning (PDF, 2514K)Download information sheet 2: Personalised care planning diagram (PDF, 2213K)Download information sheet 3: Care co-ordination (PDF, 1967K.

Mapping the nursing care with the NIC for patients in risk for pressure ulcer

Objective:To identify the nursing care prescribed for patients in risk for pressure ulcer (PU) and to compare those with the Nursing Interventions Classification (NIC) interventions. Method: Cross mapping study conducted in a university hospital. The sample was composed of 219 adult patients hospitalized in clinical and surgical units. The inclusion criteria were: score ≤ 13 in the Braden Scale and one of the nursing diagnoses, Self-Care deficit syndrome, Impaired physical mobility, Impaired tissue integrity, Impaired skin integrity, Risk for impaired skin integrity. The data were collected retrospectively in a nursing prescription system and statistically analyzed by crossed mapping. Result: It was identified 32 different nursing cares to prevent PU, mapped in 17 different NIC interventions, within them: Skin surveillance, Pressure ulcer prevention and Positioning. Conclusion: The cross mapping showed similarities between the prescribed nursing care and the NIC interventions.

Health care provider choice in the case of patient-initiated contacts. An extended version of discrete choice of model demand

This paper analyzes the nature of health care provider choice inthe case of patient-initiated contacts, with special reference toa National Health Service setting, where monetary prices are zeroand general practitioners act as gatekeepers to publicly financedspecialized care. We focus our attention on the factors that mayexplain the continuously increasing use of hospital emergencyvisits as opposed to other provider alternatives. An extendedversion of a discrete choice model of demand for patient-initiatedcontacts is presented, allowing for individual and town residencesize differences in perceived quality (preferences) betweenalternative providers and including travel and waiting time asnon-monetary costs. Results of a nested multinomial logit model ofprovider choice are presented. Individual choice betweenalternatives considers, in a repeated nested structure, self-care,primary care, hospital and clinic emergency services. Welfareimplications and income effects are analyzed by computingcompensating variations, and by simulating the effects of userfees by levels of income. Results indicate that compensatingvariation per visit is higher than the direct marginal cost ofemergency visits, and consequently, emergency visits do not appearas an inefficient alternative even for non-urgent conditions.

Quality of radiotherapy care by development of e-feedback knowledge

The aim of this three phase study was to develop quality of radiotherapy care by the e-Feedback knowledge of radiotherapy -intervention (e-Re-Know). In Phase I, the purpose was to describe the quality of radiotherapy care and its deficits experienced by cancer patients. Based on the deficits in patient education in Phase II, the purpose was to describe cancer patients’ e-knowledge expectations in radiotherapy. In Phase III, the purpose was to develop and evaluate the outcomes of the e-Re-Know among breast cancer patients. The ultimate aim was to develop radiotherapy care to support patients’ empowerment with patient e-education. In Phase I (2004-2005), the descriptive design was used, and 134 radiotherapy patients evaluated their experiences by Good Nursing Care Scale for Patients (GNCS-P) in the middle of RT period. In Phase II (2006-2008), the descriptive longitudinal design was used and 100 radiotherapy patients’ e-knowledge expectations of RT were evaluated using open-ended questionnaire developed for this study before commencing first RT, in the middle of the treatment, and concluding RT period. In Phase III, firstly (2009-2010), the e-Re-Know intervention, i.e. knowledge test and feedback, was developed in terms of empowering knowledge and implemented with e-feedback approach based on literature and expert reviews. Secondly (2011-2014), the randomized controlled study was used to evaluate the e-Re-Know. Breast cancer patients randomized to either the intervention group (n=65) receiving the e-Re-Know by e-mail before commencing first RT and standard education or the control group (n=63) receiving standard education. The data were collected before commencing first RT, concluding last RT and 3 months after last RT using RT Knowledge Test, Spielberger’s State Trait Inventory (STAI) and Functional Assessment of Cancer Therapy - Breast (FACT-B) –instruments. Data were analyzed using statistical methods and content analysis. The study showed radiotherapy patients experienced quality of care high. However, there were deficits in patient education. Furthermore, radiotherapy patients’ multidimensional e-knowledge expectations through Internet covered mainly bio-physiological and functional knowledge. Thus, the e-Re-Know was developed and evaluated. The study showed when breast cancer patients’ carried out the e-Re-Know their knowledge of side effects self-care was significantly increased and quality of life (QOL) significantly improved in line with decrease in anxiety from time before radiotherapy period to three months after. In addition, the e-Re-Know has potential to have positive effects on anxiety and QOL, regardless of patient characteristics or knowledge level. The results support the theory of empowering patient education suggesting that empowerment can be supported by confirming patients’ understanding of own knowledge level. In summary, the e-Feedback knowledge of radiotherapy (e-Re-Know) intervention can be recommended in development of quality of radiotherapy care experienced by breast cancer patients. Further research is needed to assess and develop patient-centred quality of care by patient education among cancer patients.

O Cuidador de Enfermagem e o Cuidar em Uma Unidade de Terapia Intensiva; The Nursing Caregiver and the Caring in Intensive Care Units

There are several aggressive factors in Intensive Care Units (ICU), which reach not only patients, but the nursing caregivers, since they participate in complex procedures and death of patients. Nursing caregivers may have difficulties on their daily work routine that can influence the way of care. The goal of this study was to identify the aspects of nursing caregivers working in adult ICU. It is a describe-exploratory study with qualitative approach, developed among 21 ICU adult nursing caregivers of a school hospital in Paraná. The data were collected in May and July, 2009 by recorded and transcribed semi-structured interviews. Four categories for analysis were identified: the aspects of ICU assistance, the meaning of healthcare for the nursing caregivers, the understanding of healthcare positive aspects and disclosing the difficulties of caring. The results revealed that caring is related to some factors such as mixed feelings, the mental and physical damage caused by stress; the understanding of total caring, scientific-technique procedures, family engagement in the assistance and humanization. The positive aspects are related to the welfare due to satisfaction in the work done and recognition of work. The difficulties involved death situations, psychological and biological damages, establishing links with patients and the uncaring toward the nursing caregivers.

Desafios do Programa HIPERDIA e implicações para a enfermagem

INTRODUÇÃO: O Programa HIPERDIA foi implantado em 2001 na atenção básica devido à gravidade epidemiológica da Hipertensão Arterial Sistêmica (HAS) e o Diabetes Mellitus (DM), afecções que podem acarretar sérias complicações incutindo limitações e sofrimento na vida de seus portadores e suas famílias. Nesse contexto, ressalte-se a importância da prevenção primária dessas afecções e de suas complicações. Passado mais de uma década de sua implementação, cabe refletir acerca do impacto nas condições de saúde que o Programa tem gerado entre seus usuários. OBJETIVOS: Elucidar os princípios, a filosofia e a política norteadora do Programa HIPERDIA do Ministério da Saúde (MS); descrever como funciona o atendimento do usuário pela equipe de saúde de um Programa HIPERDIA; explorar os comportamentos de vida e saúde demonstrados pelos usuários do HIPERDIA após sua inserção no Programa. DESCRIÇÃO METODOLÓGICA: Trata-se de um Estudo de Caso segundo Yin (2010) cujo objeto de estudo foi um Programa HIPERDIA executado numa Unidade Básica de Saúde da periferia de Belém-PA. Os dados foram obtidos por meio de entrevista com usuários, equipe e gestores do Programa, além da observação direta do campo, consulta de prontuários e da documentação oficial do MS. A análise dos dados obtidos foi feita por meio da estratégia analítica “Contando com Proposições Teóricas” e da técnica analítica “Combinação de Padrão”. RESULTADOS: A precarização da gestão do Programa HIPERDIA ilustrada por deficiências na infraestrutura, insumos, medicamentos e fragilidades na rede de referência e contrarreferência, a demanda espontânea excessiva que sobrecarrega a equipe de saúde alocada em número insuficiente e o contexto de pobreza e violência urbana em que os usuários vivem contribuem para a baixa adesão ao regime terapêutico e limitam a equipe em sua atuação interdisciplinar e integral. Ademais, o modelo de atenção vigente é pautado no tradicional, baseado em consultas e prescrições e que não tem se demonstrado suficiente para atender integralmente às necessidades de atenção ao portador de condição crônica, que requer cuidados prolongados com adoção de estilos de vida mais condizentes e saudáveis. CONSIDERAÇÕES FINAIS: Grandes desafios se desenham diante dos dados emergidos deste estudo e envolvem ações macrogovernamentais e intersetoriais que promovam melhorias nas condições de vida da população o que requer vontade política para investimento dos recursos necessários. Não obstante a isso, a enfermagem pode dar sua contribuição promovendo cuidado cultural e ações de autocuidado, personalizando o plano de ação e trazendo a corresponsabilidade do usuário e sua família na melhoria de sua condição de saúde.

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.

The impact of a brief foot care intervention for persons with diabetes

Purpose of the study. The purpose of this randomized controlled clinical trial was to determine if a brief intervention would improve foot self-care behaviors in adult patients with Type 2 diabetes who presented to the emergency department for non-emergent care in a predominantly Hispanic southwestern border community. ^ Methods. A pre-post-test, three-group design was used to compare the foot self-care behaviors of patients who received usual care to those who received lower extremity amputation (LEA) risk assessment and to those who received LEA risk assessment plus a brief foot self-care intervention. After being randomized into 3 groups (N = 167), baseline assessments of demographics, diabetes history, acculturation, and the Summary of Diabetes Self Care Activities (SDSCA) questionnaire and Modified Insulin Management Diabetes Self Efficacy Scale (MIMDSES) were completed in English or Spanish. At one-month, 144 (84%) participants were available for follow-up by the research assistant masked to group assignment. ^ Results. At baseline, significant differences in foot self-care behaviors and self monitoring blood glucose were noted based on ethnicity and gender. Men had significantly lower confidence in their ability to manage their diabetes overall. There was a significant difference between baseline and follow up self reported foot self-care behaviors within the intervention group (t (47) = −4.32, p < .01) and the control group (t (46) = −2.06, p < .05). There were no significant differences between groups for self-reported foot self-care behaviors. There was a significant difference in observed foot self-care behaviors between groups (F(2,135) = 2.99, p < .05). Self-efficacy scores were positively correlated with self-reported self-care behaviors. ^ Conclusions. This predominantly Hispanic population with type 2 diabetes reported performing diabetes self-care behaviors less than five days a week. There were within group changes, but no significant between group changes in reported self-care behaviors. However, at the one month follow up, there were significant differences between groups in observed foot self-care behaviors with the intervention group demonstrating the most accurate behaviors. Differences based on gender and ethnicity emphasize the need to individualize diabetes education. Priorities for culturally competent diabetes education, approaches to increasing self-efficacy and future research directions are suggested. ^

Comparing experience of diabetes care with chronic illness care in the primary care clinic using the Patient Assessment of Chronic Illness Care (PACIC)

Purpose. The overall purpose of the study was to evaluate the patient experience relevant to the Chronic Care Model as measured by the PACIC. Chronic illness care of patients with diabetes was compared to those with other chronic illnesses. In addition, chronic illness care of Hispanics was compared to those of other race/ethnicity. ^ Methods. The setting of this study was 20 primary care practices located in San Antonio, TX. The subjects in this study were consecutive adult patients age >18 yrs. Data was collected via a survey (PACIC) administered to 40-60 consecutive adult patients in each primary care clinic who presented for a scheduled appointment. ^ Results. Patient experience of the Chronic Care Model is different among those with diabetes than those with other chronic diseases: those with diabetes report a higher PACIC score. (P = 0.012) Although Hispanic patients report a higher PACIC score, patient experience of the Chronic Care Model among Hispanic patients is not significantly different than that of patients of other race/ethnicity regardless of chronic disease. (P = 0.053) After controlling for the patient characteristics of age, education, health status, and race/ethnicity, the diabetes status of the patient remains significantly associated with the outcome, the PACIC score. (P = 0.033) ^ Conclusions. Diabetes is associated with a greater experience of the Chronic Care model. Contributing factors to diabetes patients’ greater experience of the Chronic Care Model include the greater heath care use and higher self-care needs unique to individuals with diabetes. Special consideration must be given to the specific needs diabetic patients to ensure effective interventions, higher patient education, greater patient compliance, and lower health care costs. ^

An ICT-based closed-loop model to improve care for heart failure patients

Durante las últimas décadas se ha producido un fenómeno global de envejecimiento en la población. Esta tendencia se puede observar prácticamente en todos los países del mundo y se debe principalmente a los avances en la medicina, y a los descensos en las tasas de fertilidad y mortalidad. El envejecimiento de la población tiene un gran impacto en la salud de los ciudadanos, y a menudo es la causa de aparición de enfermedades crónicas. Este tipo de enfermedades supone una amenaza y una carga importantes para la sociedad, especialmente en aspectos como la mortalidad o los gastos en los sistemas sanitarios. Entre las enfermedades cardiovasculares, la insuficiencia cardíaca es probablemente la condición con mayor prevalencia y afecta a 23-26 millones de personas en todo el mundo. Normalmente, la insuficiencia cardíaca presenta un mal pronóstico y una tasa de supervivencia bajas, en algunos casos peores que algún tipo de cáncer. Además, suele ser la causa de hospitalizaciones frecuentes y es una de las enfermedades más costosas para los sistemas sanitarios. La tendencia al envejecimiento de la población y la creciente incidencia de las enfermedades crónicas están llevando a una situación en la que los sistemas de salud no son capaces de hacer frente a la demanda de la sociedad. Los servicios de salud existentes tendrán que adaptarse para ser efectivos y sostenibles en el futuro. Es necesario identificar nuevos paradigmas de cuidado de pacientes, así como mecanismos para la provisión de servicios que ayuden a transformar estos sistemas sanitarios. En este contexto, esta tesis se plantea la búsqueda de soluciones, basadas en las Tecnologías de la Información y la Comunicación (TIC), que contribuyan a realizar la transformación en los sistemas sanitarios. En concreto, la tesis se centra en abordar los problemas de una de las enfermedades con mayor impacto en estos sistemas: la insuficiencia cardíaca. Las siguientes hipótesis constituyen la base para la realización de este trabajo de investigación: 1. Es posible definir un modelo basado en el paradigma de lazo cerrado y herramientas TIC que formalice el diseño de mejores servicios para pacientes con insuficiencia cardíaca. 2. El modelo de lazo cerrado definido se puede utilizar para definir un servicio real que ayude a gestionar la insuficiencia cardíaca crónica. 3. La introducción, la adopción y el uso de un servicio basado en el modelo definido se traducirá en mejoras en el estado de salud de los pacientes que sufren insuficiencia cardíaca. a. La utilización de un sistema basado en el modelo de lazo cerrado definido mejorará la experiencia del usuario de los pacientes. La definición del modelo planteado se ha basado en el estándar ISO / EN 13940- Sistema de conceptos para dar soporte a la continuidad de la asistencia. Comprende un conjunto de conceptos, procesos, flujos de trabajo, y servicios como componentes principales, y representa una formalización de los servicios para los pacientes con insuficiencia cardíaca. Para evaluar el modelo definido se ha definido un servicio real basado en el mismo, además de la implementación de un sistema de apoyo a dicho servicio. El diseño e implementación de dicho sistema se realizó siguiendo la metodología de Diseño Orientado a Objetivos. El objetivo de la evaluación consistía en investigar el efecto que tiene un servicio basado en el modelo de lazo cerrado sobre el estado de salud de los pacientes con insuficiencia cardíaca. La evaluación se realizó en el marco de un estudio clínico observacional. El análisis de los resultados ha comprendido métodos de análisis cuantitativos y cualitativos. El análisis cuantitativo se ha centrado en determinar el estado de salud de los pacientes en base a datos objetivos (obtenidos en pruebas de laboratorio o exámenes médicos). Para realizar este análisis se definieron dos índices específicos: el índice de estabilidad y el índice de la evolución del estado de salud. El análisis cualitativo ha evaluado la autopercepción del estado de salud de los pacientes en términos de calidad de vida, auto-cuidado, el conocimiento, la ansiedad y la depresión, así como niveles de conocimiento. Se ha basado en los datos recogidos mediante varios cuestionarios o instrumentos estándar (i.e. EQ-5D, la Escala de Ansiedad y Depresión (HADS), el Cuestionario de Cardiomiopatía de Kansas City (KCCQ), la Escala Holandesa de Conocimiento de Insuficiencia Cardíaca (DHFKS), y la Escala Europea de Autocuidado en Insuficiencia Cardíaca (EHFScBS), así como cuestionarios dedicados no estandarizados de experiencia de usuario. Los resultados obtenidos en ambos análisis, cuantitativo y cualitativo, se compararon con el fin de evaluar la correlación entre el estado de salud objetivo y subjetivo de los pacientes. Los resultados de la validación demostraron que el modelo propuesto tiene efectos positivos en el cuidado de los pacientes con insuficiencia cardíaca y contribuye a mejorar su estado de salud. Asimismo, ratificaron al modelo como instrumento válido para la definición de servicios mejorados para la gestión de esta enfermedad. ABSTRACT During the last decades we have witnessed a global aging phenomenon in the population. This can be observed in practically every country in the world, and it is mainly caused by the advances in medicine, and the decrease of mortality and fertility rates. Population aging has an important impact on citizens’ health and it is often the cause for chronic diseases, which constitute global burden and threat to the society in terms of mortality and healthcare expenditure. Among chronic diseases, Chronic Heart Failure (CHF) or Heart Failure (HF) is probably the one with highest prevalence, affecting between 23 and 26 million people worldwide. Heart failure is a chronic, long-term and serious condition with very poor prognosis and worse survival rates than some type of cancers. Additionally, it is often the cause of frequent hospitalizations and one of the most expensive conditions for the healthcare systems. The aging trends in the population and the increasing incidence of chronic diseases are leading to a situation where healthcare systems are not able to cope with the society demand. Current healthcare services will have to be adapted and redefined in order to be effective and sustainable in the future. There is a need to find new paradigms for patients’ care, and to identify new mechanisms for services’ provision that help to transform the healthcare systems. In this context, this thesis aims to explore new solutions, based on ICT, that contribute to achieve the needed transformation within the healthcare systems. In particular, it focuses on addressing the problems of one of the diseases with higher impact within these systems: Heart Failure. The following hypotheses represent the basis to the elaboration of this research: 1. It is possible to define a model based on a closed-loop paradigm and ICT tools that formalises the design of enhanced healthcare services for chronic heart failure patients. 2. The described closed-loop model can be exemplified in a real service that supports the management of chronic heart failure disease. 3. The introduction, adoption and use of a service based on the outlined model will result in improvements in the health status of patients suffering heart failure. 4. The user experience of patients when utilizing a system based on the defined closed-loop model will be enhanced. The definition of the closed-loop model for health care support of heart failure patients have been based on the standard ISO/EN 13940 System of concepts to support continuity of care. It includes a set of concept, processes and workflows, and services as main components, and it represent a formalization of services for heart failure patients. In order to be validated, the proposed closed-loop model has been instantiated into a real service and a supporting IT system. The design and implementation of the system followed the user centred design methodology Goal Oriented Design. The validation, that included an observational clinical study, aimed to investigate the effect that a service based on the closed-loop model had on heart failure patients’ health status. The analysis of results comprised quantitative and qualitative analysis methods. The quantitative analysis was focused on determining the health status of patients based on objective data (obtained in lab tests or physical examinations). Two specific indexes where defined and considered in this analysis: the stability index and the health status evolution index. The qualitative analysis assessed the self-perception of patients’ health status in terms of quality of life, self-care, knowledge, anxiety and depression, as well as knowledge levels. It was based on the data gathered through several standard instruments (i.e. EQ-5D, the Hospital Anxiety and Depression Scale, the Kansas City Cardiomyopathy Questionnaire, the Dutch Heart Failure Knowledge Scale, and the European Heart Failure Self-care Behaviour Scale) as well as dedicated non-standardized user experience questionnaires. The results obtained in both analyses, quantitative and qualitative, were compared in order to assess the correlation between the objective and subjective health status of patients. The results of the validation showed that the proposed model contributed to improve the health status of the patients and had a positive effect on the patients’ care. It also proved that the model is a valid instrument for designing enhanced healthcare services for heart failure patients.

Achieving better in-hospital and after-hospital care of patients with acute cardiac disease

In patients hospitalised with acute coronary syndromes (ACS) and congestive heart failure (CHF), evidence suggests opportunities for improving in-hospital and after hospital care, patient self-care, and hospital-community integration. A multidisciplinary quality improvement program was designed and instigated in Brisbane in October 2000 involving 250 clinicians at three teaching hospitals, 1080 general practitioners (GPs) from five Divisions of General Practice, 1594 patients with ACS and 904 patients with CHF. Quality improvement interventions were implemented over 17 months after a 6-month baseline period and included: clinical decision support (clinical practice guidelines, reminders, checklists, clinical pathways); educational interventions (seminars, academic detailing); regular performance feedback; patient self-management strategies; and hospital-community integration (discharge referral summaries; community pharmacist liaison; patient prompts to attend GPs). Using a before-after study design to assess program impact, significantly more program patients compared with historical controls received: ACS: Angiotensin-converting enzyme (ACE) inhibitors and lipid-lowering agents at discharge, aspirin and beta-blockers at 3 months after discharge, inpatient cardiac counselling, and referral to outpatient cardiac rehabilitation. CHF. Assessment for reversible precipitants, use of prophylaxis for deep-venous thrombosis, beta-blockers at discharge, ACE inhibitors at 6 months after discharge, imaging of left ventricular function, and optimal management of blood pressure levels. Risk-adjusted mortality rates at 6 and 12 months decreased, respectively, from 9.8% to 7.4% (P=0.06) and from 13.4% to 10.1% (P= 0.06) for patients with ACS and from 22.8% to 15.2% (P < 0.001) and from 32.8% to 22.4% (P= 0.005) for patients with CHF. Quality improvement programs that feature multifaceted interventions across the continuum of care can change clinical culture, optimise care and improve clinical outcomes.