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PurposeThis study examines how modular interfaces manifest in multi-provider contexts and how they can improve coordination and customization of services. The aim of the study is to describe interfaces in multi-provider contexts and elaborate on how they support the delivery of integrated patient care.Design/methodology/approachA qualitative, multiple case study was conducted in two multi-provider contexts in healthcare services: one representing paediatric Down syndrome care in the Netherlands and one representing home care for the elderly in Finland. Data collection involved semi-structured interviews in both contexts.FindingsThis study provides insight into several types of interfaces and their role in multi-provider contexts. Several inter- and intra-organizational situations were identified in which the delivery of integrated patient care was jeopardized. This study describes how interfaces can help to alleviate these situations.Originality/valueThis study deepens the understanding of interfaces in service modularity by describing interfaces in multi-provider contexts. The multi-provider contexts studied inspired to incorporate the inter-organizational aspect into the literature on interfaces in service modularity. This study further develops the typology for interfaces in modular services by adding a third dimension to the typology, that is, the orientation of interfaces.

AbstractPeople with Down syndrome have complex health care needs which are not always fully met. Health care improvements are required to better meet these needs. Quality indicators are an important tool for improving health care. However, quality indicators for health care for people with Down syndrome are scarce. Existing quality indicators focus on medical (physical) needs or the clinical setting, even though it is acknowledged that quality measures should reflect the total of quality aspects relevant to the population at stake, which may encompass aspects beyond the medical domain. These aspects beyond the medical domain are the focus of the current paper, which aims to provide insight into the way people with Down syndrome live their lives, how health care may fit in, and how this may impact the development of quality indicators. The paper is based on data originating from interviews with people with Down syndrome and their parents as well as focus groups with support staff members working in assisted living facilities for people with intellectual disability. The data revealed a lot of variation in how people with Down syndrome live their lives. Nevertheless, we were able to identify 11 topics, which we grouped into three overarching themes: (1) Being different yet living a normal life; (2) Down syndrome‐(un)friendly society and services; and (3) family perspective. The variation in our data stresses the importance of health care that takes a person's life into account beyond the medical domain, as exemplified by the identified topics. Our findings also show that a good life is not merely depending on good health care supported by well‐defined quality indicators, but on (support in) all life domains.

AbstractBackgroundPeople with Down syndrome (PDS) have complex healthcare needs. Little is known about the quality of health care for PDS, let alone how it is appraised by PDS and their caregivers. This study explores the perspectives of PDS, their parents and support staff regarding quality in health care for PDS.MethodThe present authors conducted semi‐structured interviews with 18 PDS and 15 parents, and focus groups with 35 support staff members (of PDS residing in assisted living facilities) in the Netherlands.ResultsAccording to the participants, healthcare quality entails well‐coordinated health care aligned with other support and care systems, a person‐centred and holistic approach, including respect, trust and provider–patient communication adapted to the abilities of PDS.ConclusionsOur findings may be used to improve health care for PDS, and provide insight into how health care could match the specific needs of PDS.

Objetivo: Describir las estimaciones de supervivencia global a dos años para mama (mujeres) y cuello uterino en tres cohortes (tratadas por primera vez en 2007, 2010, 2012) en el Instituto Nacional de Cancerología de Colombia. Métodos: Se incluyeron las pacientes tratadas por primera vez en el Instituto Nacional de Cancerología por cáncer de mama y de cuello uterino en los años 2007, 2010, y 2012, y quienes no habían tenido un diagnóstico previo de otro cáncer. Se cruzaron las bases de datos del registro hospitalario de cáncer con las gubernamentales para obtener información de seguimiento de los casos. Se estimó la probabilidad de sobrevivir a 24 meses a partir de la fecha de ingreso mediante el método de Kaplan-Meier. Se aplicó la prueba de rango logarítmico para evaluar las diferencias entre los grupos. Resultados: Se analizaron 1,928 casos de cáncer de mama y 1,189 de cuello uterino. La estimación de la supervivencia global a 24 meses para mama fue 79.6% (IC 95% 77.8-81.4) y de 63.3% (IC 95% 60.6-66.0) para cuello uterino, no se observaron tendencias en supervivencia con el año de ingreso. En los estadios clínicos avanzados la supervivencia global disminuyó en estadio clínico IV, tanto para cáncer de mama, 32.2% (IC 95% 28.4-44.0), como para cuello uterino 22.6% (IC 95% 11,4; 33,8). Conclusiones: El cáncer de mama presentó mejor supervivencia en el Instituto Nacional de Cancerología frente al cáncer de cuello uterino. La supervivencia global se comportó de manera estable con los años para ambos tipos de cáncer. ; Q3 ; Q3 ; Artículo original ; 102-108 ; Objective: to provide and compare estimations of two-year overall survival for cervical and female breast cancer in three cohorts (first treated in 2007, 2010, 2012) at the Instituto Nacional de Cancerología of Colombia Methods: All patients first treated at the Instituto Nacional de Cancerología for breast or cervical cancer in the years 2007, 2010, 2012, without a prior cancer diagnosis, were included for the study. The hospital-based cancer registry was crosslinked with governmental databases to obtain follow-up information on all patients. Probability of surviving 24 months since the date of entry at the hospital was estimated using Kaplan-Meier methods, using the log-rank test to evaluate differences between groups. Results: We analyzed 1,928 breast cancer cases and 1,189 cervical cancer cases, resulting in an overall survival probability at 24 months of 79.6% (95% CI: 77.8-81.4) for BC and of 63.3% (95% CI: 60.6- 66.0) for cervical cancer, there were no differences in survival for year of entry. Advanced clinical stage substantial affected overall survival, being 32.2% (95% CI: 28.4-44.0) for stage IV breast cancer and 22.6% (95% CI: 11.4-33.8) for stage IV cervical cancer. Conclusions: Breast cancer was the cancer with the best survival at Instituto Nacional de Cancerología; cervical cancer the one with the lowest survival. Overall survival did not change over the years for any of the cancers.

Artículo original ; 19-26 ; Abstract Aims To provide demographical and clinical characteristics and estimations of 2-year overall survival (OS) of oral and oropharyngeal cancer (OOC) patients treated in the Colombian National Cancer Institute (INC) between 2004 and 2013. Methods All 1108 patients frst treated at INC for OOC in the three periods, without a prior cancer diagnosis, were included in this study. The INC hospital-based cancer registry was cross-linked with governmental databases to obtain follow-up information on all patients. Probability of surviving 24 months since the date of entry at INC was estimated using Kaplan–Meier methods, using the log-rank test to evaluate diferences between groups. In order to evaluate the relative efect of age, sex, clinical stage, anatomical site and type of health insurance on survival, we constructed a multivariate Cox proportional hazard model. Results The overall survival probability at 24 months was 48.2% (95% CI 45.3; 51.1), which was stable over time. Advanced age and clinical stage substantially afected overall survival, being 30.3% (95% CI 25.2; 35.4) for age > 70 and 34.7% (95% CI 29.4; 40.0) for stage IV disease. Hazard ratios were signifcantly higher for patients aged 70 and over [HR 1.99 (95% CI 1.41–2.79)] and advanced stage cancers [HR 2.16 (95% CI 1.55–3.01)], whereas patients with cancers of the tonsils or salivary glands had a strongly reduced risks compared to tongue and oral cavity cancer [HR 0.56 (95% CI 0.43–0.72)]. Conclusions Oral and oropharyngeal cancer has a very poor prognosis which was stable over time. Considering the late stage at diagnosis, much can be gained by improving early detection and treatment.

Los registros de cáncer de base poblacional (RCBP) son los responsables del reporte de incidencia, mortalidad y supervivencia de los pacientes con cáncer para sus respectivas poblaciones. Los RCBP del país son definidos por la legislación colombiana como fuentes de información de los registros nacionales de cáncer para adultos y niños, pero carecen de un soporte jurídico que permita el acceso a las fuentes oficiales de información nacional y enfrentan restricciones dadas por la ley para el tratamiento de datos personales que impide la transferencia de información de los registros nacionales de cáncer y todas sus fuentes hacia los RCBP. Se analizarán los problemas de acceso a la información de estadísticas vitales del país, así como las consecuencias de estas barreras de acceso para los RCBP, y se presentarán argumentos que sustenten la necesidad de que los RCBP puedan acceder a la información necesaria para poder cumplir su objetivo ; Q4 ; 56-61 ; Pacientes con cáncer ; Population-based cancer registries (PBCR) are responsible for reporting incidence, mortality and survival for cancer patients in their respective populations. Colombian legislation assigned the PBCR as sources of information for the national observatory on cancer. However, the PBCR lack legal support that officially assures access to official sources of national vital statistics and information on healthcare consumption; they face restrictions provided by law for the processing of personal data that prevents the transfer of information from national cancer databases and all their sources to the PBCR. We provide analysis of the problems of access to information on vital statistics of the country and the consequences of these access barriers for the PBCR, the presented arguments illustrate the need for the PBCR to have a smooth access to such information to be able to comply with their objectives.

Q2 ; 104-112 ; In this paper, we present the most currently available data on real access to high quality diagnostic and curative and palliative care in Colombia, a middle income country with relatively recent large healthcare reforms. We will focus on cancer types with a good average prognosis when detected and treated adequately and which are prioritized in national policies and cancer plans: cancers of the breast, cervix, prostate, colorectum and childhood cancers. These cancers have a quite poor prognosis compared to high-income countries. We find that, despite having achieved an almost "universal health coverage", Colombia suffers serious problems in accessibility to preventative, diagnostic and treatment services for patients with cancer. People living in poverty have lower real access to all types of care, but other problems are due to lack of health literacy, beliefs and knowledge. Much can be gained by early detection, the advanced stages at diagnosis of many cancers can be avoided by increasing awareness amongst both the general public and health care professionals. Delays in diagnosis and treatment can be reduced, changes in legislation and bureaucratic processes, and increases in trained human resources and equipment is needed. The economic impact of getting a cancer diagnosis to patients and their families is understudied but seems to be substantial, as well as studies on quality of life of cancer patients and survivors - providing ample room for improvement.

Background: In Colombia, recent legislation regarding end-of-life decisions includes palliative sedation, advance directives and euthanasia. We analysed which aspects influence health professionals´ decisions regarding end-of-life medical decisions and care for cancer patients. Methods: Qualitative descriptive–exploratory study based on phenomenology using semi-structured interviews. We interviewed 28 oncologists, palliative care specialists, general practitioners and nurses from three major Colombian institutions, all involved in end-of-life care of cancer patients: Hospital Universitario San Ignacio and Instituto Nacional de Cancerología in Bogotá and Hospital Universitario San José in Popayan. Results: When making decisions regarding end-of-life care, professionals consider: 1. Patient's clinical condition, cultural and social context, in particular treating indigenous patients requires special skills. 2. Professional skills and expertise: training in palliative care and experience in discussing end-of-life options and fear of legal consequences. Physicians indicate that many patients deny their imminent death which hampers shared decision-making and conversations. They mention frequent ambiguity regarding who initiates conversations regarding end-of-life decisions with patients and who finally takes decisions. Patients rarely initiate such conversations and the professionals normally do not ask patients directly for their preferences. Fear of confrontation with family members and lawsuits leads healthcare workers to carry out interventions such as initiating artificial feeding techniques and cardiopulmonary resuscitation, even in the absence of expected benefits. The opinions regarding the acceptability of palliative sedation, euthanasia and use of medications to accelerate death without the patients´ explicit request vary greatly. 3. Conditions of the insurance system: limitations exist in the offer of oncology and palliative care services for important proportions of the Colombian population. Colombians ...

BACKGROUND: In Colombia, recent legislation regarding end-of-life decisions includes palliative sedation, advance directives and euthanasia. We analysed which aspects influence health professionals´ decisions regarding end-of-life medical decisions and care for cancer patients. METHODS: Qualitative descriptive–exploratory study based on phenomenology using semi-structured interviews. We interviewed 28 oncologists, palliative care specialists, general practitioners and nurses from three major Colombian institutions, all involved in end-of-life care of cancer patients: Hospital Universitario San Ignacio and Instituto Nacional de Cancerología in Bogotá and Hospital Universitario San José in Popayan. RESULTS: When making decisions regarding end-of-life care, professionals consider: 1. Patient's clinical condition, cultural and social context, in particular treating indigenous patients requires special skills. 2. Professional skills and expertise: training in palliative care and experience in discussing end-of-life options and fear of legal consequences. Physicians indicate that many patients deny their imminent death which hampers shared decision-making and conversations. They mention frequent ambiguity regarding who initiates conversations regarding end-of-life decisions with patients and who finally takes decisions. Patients rarely initiate such conversations and the professionals normally do not ask patients directly for their preferences. Fear of confrontation with family members and lawsuits leads healthcare workers to carry out interventions such as initiating artificial feeding techniques and cardiopulmonary resuscitation, even in the absence of expected benefits. The opinions regarding the acceptability of palliative sedation, euthanasia and use of medications to accelerate death without the patients´ explicit request vary greatly. 3. Conditions of the insurance system: limitations exist in the offer of oncology and palliative care services for important proportions of the Colombian population. Colombians ...

AbstractWe aimed to investigate whether the dialogue tools My Positive Health (MPH) and Individual Recovery Outcomes Counter (I.ROC) tools were useful for quantitively measuring the positive health construct for monitoring and scientific purposes as well. An observational cross-sectional study was conducted in a representative general Dutch population (the LISS panel) to investigate factor structures and internal consistency from the 42-items MPH and 12-items I.ROC. After randomly splitting the dataset, principal component analysis (PCA) and confirmatory factor analysis (CFA) were applied. Pearson and Spearman correlation coefficient between both tools' total scores were calculated. 2,457 participants completed the questionnaires. A six-factor structure was extracted for MPH (PH42) and a two-factor structure for I.ROC (I.ROC12). Explained variances were 68.1% and 56.1%, respectively. CFA resulted in good fit indices. Cronbach's alphas were between 0.74 to 0.97 (PH42) and 0.73 to 0.87 (I.ROC12). Pearson correlation between the total scores was 0.8 and Spearman correlation was 0.77. Both PH42 and I.ROC12 are useful to quantitatively measure positive health aspects which can be summarised in sum scores. The dimensions found in this study and the corresponding item division differed from the dimensions of the original dialogue tools. Further research is recommended focussing on item reduction for PH42, factor structure of I.ROC, assessment of construct validity (in a general population) and response scales in more depth.

Background: Cancer patients' end-of-life care may involve complex decision-making processes. Colombia has legislation regarding provision of and access to palliative care and is the only Latin American country with regulation regarding euthanasia. We describe medical end-of-life decision-making practices among cancer patients in three Colombian hospitals. Methods: Cancer patients who were at the end-of-life and attended in participating hospitals were identified. When these patients deceased, their attending physician was invited to participate. Attending physicians of 261 cancer patients (out of 348 identified) accepted the invitation and answered a questionnaire regarding end-of-life decisions: a.) decisions regarding the withdrawal or withholding of potentially life-prolonging medical treatments, b.) intensifying measures to alleviate pain or other symptoms with hastening of death as a potential side effect, and c.) the administration, supply or prescription of drugs with an explicit intention to hasten death. For each question addressing the first two decision types, we asked if the decision was fully or partially made with the intention or consideration that it may hasten the patient's death. Results: Decisions to withdraw potentially life-prolonging treatment were made for 112 (43%) patients, 16 of them (14%) with an intention to hasten death. For 198 patients (76%) there had been some decision to not initiate potentially life-prolonging treatment. Twenty-three percent of patients received palliative sedation, 97% of all patients received opioids. Six patients (2%) explicitly requested to actively hasten their death, for two of them their wish was fulfilled. In another six patients, medications were used with the explicit intention to hasten death without their explicit request. In 44% (n = 114) of all cases, physicians did not know if their patient had any advance care directives, 26% (n = 38) of physicians had spoken to the patient regarding the possibility of certain treatment decisions to hasten death ...

BACKGROUND: Cancer patients' end-of-life care may involve complex decision-making processes. Colombia has legislation regarding provision of and access to palliative care and is the only Latin American country with regulation regarding euthanasia. We describe medical end-of-life decision-making practices among cancer patients in three Colombian hospitals. METHODS: Cancer patients who were at the end-of-life and attended in participating hospitals were identified. When these patients deceased, their attending physician was invited to participate. Attending physicians of 261 cancer patients (out of 348 identified) accepted the invitation and answered a questionnaire regarding end-of-life decisions: a.) decisions regarding the withdrawal or withholding of potentially life-prolonging medical treatments, b.) intensifying measures to alleviate pain or other symptoms with hastening of death as a potential side effect, and c.) the administration, supply or prescription of drugs with an explicit intention to hasten death. For each question addressing the first two decision types, we asked if the decision was fully or partially made with the intention or consideration that it may hasten the patient's death. RESULTS: Decisions to withdraw potentially life-prolonging treatment were made for 112 (43%) patients, 16 of them (14%) with an intention to hasten death. For 198 patients (76%) there had been some decision to not initiate potentially life-prolonging treatment. Twenty-three percent of patients received palliative sedation, 97% of all patients received opioids. Six patients (2%) explicitly requested to actively hasten their death, for two of them their wish was fulfilled. In another six patients, medications were used with the explicit intention to hasten death without their explicit request. In 44% (n = 114) of all cases, physicians did not know if their patient had any advance care directives, 26% (n = 38) of physicians had spoken to the patient regarding the possibility of certain treatment decisions to hasten death ...

Background: Sepsis and severe focal infections represent a substantial disease burden in children admitted to hospital. We aimed to understand the burden of disease and outcomes in children with life-threatening bacterial infections in Europe. Methods: The European Union Childhood Life-threatening Infectious Disease Study (EUCLIDS) was a prospective, multicentre, cohort study done in six countries in Europe. Patients aged 1 month to 18 years with sepsis (or suspected sepsis) or severe focal infections, admitted to 98 participating hospitals in the UK, Austria, Germany, Lithuania, Spain, and the Netherlands were prospectively recruited between July 1, 2012, and Dec 31, 2015. To assess disease burden and outcomes, we collected demographic and clinical data using a secured web-based platform and obtained microbiological data using locally available clinical diagnostic procedures. Findings: 2844 patients were recruited and included in the analysis. 1512 (53·2%) of 2841 patients were male and median age was 39·1 months (IQR 12·4–93·9). 1229 (43·2%) patients had sepsis and 1615 (56·8%) had severe focal infections. Patients diagnosed with sepsis had a median age of 27·6 months (IQR 9·0–80·2), whereas those diagnosed with severe focal infections had a median age of 46·5 months (15·8–100·4; p<0·0001). Of 2844 patients in the entire cohort, the main clinical syndromes were pneumonia (511 [18·0%] patients), CNS infection (469 [16·5%]), and skin and soft tissue infection (247 [8·7%]). The causal microorganism was identified in 1359 (47·8%) children, with the most prevalent ones being Neisseria meningitidis (in 259 [9·1%] patients), followed by Staphylococcus aureus (in 222 [7·8%]), Streptococcus pneumoniae (in 219 [7·7%]), and group A streptococcus (in 162 [5·7%]). 1070 (37·6%) patients required admission to a paediatric intensive care unit. Of 2469 patients with outcome data, 57 (2·2%) deaths occurred: seven were in patients with severe focal infections and 50 in those with sepsis. Interpretation: Mortality in children admitted to hospital for sepsis or severe focal infections is low in Europe. The disease burden is mainly in children younger than 5 years and is largely due to vaccine-preventable meningococcal and pneumococcal infections. Despite the availability and application of clinical procedures for microbiological diagnosis, the causative organism remained unidentified in approximately 50% of patients. Funding: European Union's Seventh Framework programme.