Defining consensus norms for palliative care of people with intellectual disabilities in Europe using Delphi methods: A White Paper from the European Association of Palliative care

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their
palliative care needs.
Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe.
Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus
were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for
Palliative Care reviewed and approved the final version.
Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks.
Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training
and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted.
Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

A avaliação da atenção básica e o trabalho dos agentes comunitários de saúde: implantação do PMAQ-AB na região do Médio Paraíba Fluminense

Este estudo tem por objeto a implantação do Programa Nacional de Melhoria do Acesso e da Qualidade da Atenção Básica (PMAQ-AB) na região do Médio Paraíba fluminense sob o olhar dos Agentes Comunitários de Saúde e dos gestores da Atenção Básica. A indagação norteadora desta pesquisa foi: em que medida o Programa Nacional de Melhoria do Acesso e da Qualidade da Atenção Básica (PMAQ-AB) capta a importância do trabalho dos Agentes Comunitários de Saúde? Partindo do pressuposto que o desenvolvimento do PMAQ não se dá, no concreto, de forma linear nem livre de tensões, e que o trabalho do ACS, por seu caráter de mediação, é um campo privilegiado para análise sobre essas tensões. O objetivo geral do estudo é analisar a implantação do Programa Nacional de Melhoria do Acesso e da Qualidade da Atenção Básica (PMAQ-AB) nos municípios da região do Médio Paraíba do Estado do Rio de Janeiro, tomando como eixo de análise o processo de trabalho dos agentes comunitários de saúde. O estudo apresenta uma abordagem quantitativa e qualitativa, através de questionários, entrevistas e grupos focais e o método de análise dos dados qualitativos foi de base interpretativa com apoio do referencial da Hermenêutica-Dialética. O campo da pesquisa foi a região do Médio Paraíba fluminense. Os resultados evidenciam que na opinião dos gestores, o PMAQ aparece como uma estratégia norteadora do processo de trabalho das equipes, que possibilita o resgate de alguns princípios da ESF, já os ACS apontam que o seu primeiro contato com o PMAQ foi fundamentado na pactuação do cumprimento de metas que resultariam no pagamento de um incentivo financeiro. Percebemos que não existe uma crítica quanto a implantação do PMAQ, nem por parte da gestão, muito menos por parte das equipes. Não encontramos nos relatos dos gestores nenhuma menção ao trabalho do ACS, sua participação e importância em todas as fases do PMAQ. Os gestores consideram que o PMAQ promoveu uma mudança positiva na forma de organização do trabalho dos ACS. Os ACS não perceberam mudanças em sua rotina a partir da implantação do PMAQ, exceto pela questão da sobrecarga de trabalho. Conclui-se que o PMAQ-AB não capta a potencialidade e o trabalho dos ACS. A participação do ACS nas fases do PMAQ é identificada somente no aspecto instrumental, ou seja, dele ser um produtor, um registrador de informações.Para os gestores o PMAQ surge como algo que abre um horizonte positivo, de maior envolvimento e retomada de alguns processos pelas EAB, mas não é assim, de fato, que a questão chega até os ACS e, por consequência, nem para as equipes.

Desempeño de las RISS en relación al acceso, coordinación y calidad de la atención en cáncer de mama y diabetes mellitus tipo 2 en Colombia

El objetivo de este capítulo es mostrar los resultados de investigación del desempeño de las redes de servicios de salud frente a diferentes dimensiones relacionadas al acceso, coordinación y calidad de la atención en dos enfermedades crónicas como es el cáncer de mama y la diabetes en Colombia, importantes patologías por su incidencia e impacto así como por la necesidad de la mecanismos efectivos de coordinación para la adecuada atención de los usuarios del sistema de salud. Por tanto, se realiza el análisis del desempeño de dos redes de servicios de salud en la atención de usuarias con diagnostico confirmado de cáncer de mama, vinculadas unas a redes pertenecientes al régimen contributivo y otras al régimen subsidiado. Redes que también fueron consideradas para el análisis del desempeño en la atención de usuarios con diagnostico confirmado de diabetes, en el que de manera adicional participó otra red perteneciente al régimen subsidiado con área de operación en el municipio de Soacha, puesto que las dos anteriores tiene influencia en la ciudad de Bogotá. La fuente primaria de los datos fue la historia clínica y éstos fueron extraídos de acuerdo a ciertos indicadores seleccionados por el equipo investigador a través de un previo proceso de validación y a partir de su importancia para evidenciar el desempeño de las redes de servicios de salud en las dimensiones enunciadas anteriormente. Se muestran los resultados del estudio, a partir de los cuales se propone una breve discusión y conclusiones.

Preferences of Hungarian consumers for quality, access and price attributes of health care services — result of a discrete choice experiment

In 2010, a household survey was carried out in Hungary among 1037 respondents to study consumer preferences and willingness to pay for health care services. In this paper, we use the data from the discrete choice experiments included in the survey, to elicit the preferences of health care consumers about the choice of health care providers. Regression analysis is used to estimate the effect of the improvement of service attributes (quality, access, and price) on patients’ choice, as well as the differences among the socio-demographic groups. We also estimate the marginal willingness to pay for the improvement in attribute levels by calculating marginal rates of substitution. The results show that respondents from a village or the capital, with low education and bad health status are more driven by the changes in the price attribute when choosing between health care providers. Respondents value the good skills and reputation of the physician and the attitude of the personnel most, followed by modern equipment and maintenance of the office/hospital. Access attributes (travelling and waiting time) are less important. The method of discrete choice experiment is useful to reveal patients’ preferences, and might support the development of an evidence-based and sustainable health policy on patient payments.

Health care quality : implications of purchasers' experiences for HCFA : report to the Chairman and Ranking Minority [Member], Special Committee on Aging, U.S. Senate /

"B-279631"--P. [1].

Lung health care for Aboriginal and Torres Strait Islander Queenslanders : breathing easy is not so easy

Objectives In Aboriginal and Torres Strait Islander peoples in Queensland, to (a) determine the disease burden of common chronic lung diseases and (b) identify areas of need with respect to lung health services. Methods Literature reviews and analyses of hospitalisation and mortality data were used to describe disease epidemiology and available programs and services. Key stakeholder interviews and an online survey of health professionals were used to evaluate lung health services across the state and to identify services, needs and gaps. Results Morbidity and mortality from respiratory diseases in the Indigenous population is substantially higher than the non-Indigenous population across all age groups and regions. There are inadequate clinical services and resources to address disease prevention, detection, intervention and management in an evidence-based and culturally acceptable fashion. There is a lack of culturally appropriate educational resources and management programs, insufficient access to appropriately engaged Indigenous health professionals, a lack of multi-disciplinary specialist outreach teams, fragmented information systems and inadequate coordination of care. Conclusions Major initiatives are required at all levels of the healthcare system to adequately address service provision for Indigenous Queenslanders with lung diseases, including high quality research to investigate the causes for poor lung health, which are likely to be multifactorial.

Late-stage, primary open-angle glaucoma in Europe:Social and health care maintenance costs and quality of life of patients from 4 countries

Objective: The purpose of this study was to estimate costs and quality of life (QoL) of late-stage glaucoma patients in 4 European countries. Methods: Retrospective review of medical charts of patients with POAG who were followed in a low-vision or vision rehabilitation center in one of 4 countries for at least 1 year was used to determine patient characteristics, health status, and health care resource use. Visual impairment was measured by best-corrected visual acuity (Snellen score). Patients were also interviewed over the telephone in order to assess their health-related QoL (using EuroQol EQ-5D) and use of resources including: the number of visits to rehabilitation centers, visits to hospital and non-hospital specialists, the use of low-vision devices, medication, tests, and the use of hired home help. The costs associated with resource use were calculated from the perspective of a third-party payer of health and social care based on resource usage and unit costs in each country. Results: Patients undergoing visual rehabilitation in France (n=21), Denmark (n=59), Germany (n=60), and the United Kingdom (n=22) were identified, interviewed and had their medical charts reviewed. Annual maintenance costs of late-stage glaucoma amounted to €830 (±445) on average. Average home help costs were more than 3 times higher. QoL, on average, was 0.65 (±0.28). QoL was positively correlated with the level of visual acuity in the patients' best eye. On the other hand, visual acuity was also positively correlated to health care costs, but negatively correlated to costs of home help. Conclusions: The study was limited by its observational, uncontrolled design. The finding that late-stage glaucoma is associated with higher home help costs than health care maintenance costs suggests that potential savings from a better preventive treatment are to be found for social care payers rather than health care payers. © 2008 Informa UK Ltd All rights reserved.

Hispanic incorporation and access to health care in Houston and Harris County, Texas: Adopting an Hispanic perspective to the Aday and Andersen model

This study examines Hispanic levels of incorporation and access to health care. Applying the Aday and Andersen framework for the study of access, the study examined the relationship between two levels of Hispanic incorporation into U.S. society, i.e., mainstream versus ethnic, and potential and realized measures of access to health care. Data for the study were drawn from a 1992 telephone survey of 600 randomly selected Hispanics in Houston and Harris County.^ The hypotheses tested were: (1) Hispanics who are incorporated into mainstream society are more likely to have better potential and realized access to health care than those who are incorporated into ethnic-group enclaves regardless of their socioeconomic status (SES), health status and health needs, and (2) there is no interaction between the levels of incorporation (mainstream or ethnic) and SES, health status, and health needs in predicting potential and realized access.^ The data analysis supported Hypothesis One for the two measures of potential access. The results of bivariate and multiple logistic regression analyses indicated that for Hispanics in Houston and Harris County, being in the "mainstream" incorporation category increased their potential access to care, having "health insurance" and a "regular place of care". For the selected measure of realized access, having a "regular check-up", the analysis did not demonstrate statistically significant differences in having a regular check-up among Hispanics incorporated in the ethnic or mainstream incorporation categories.^ Hypothesis Two, that there is no interaction between the levels of incorporation and socioeconomic characteristics, health status, and health needs in predicting potential and realized access among Hispanics was supported by the data. The results of the logistic regression analysis showed that, after adjusting for socioeconomic status, health status, and health needs, the association between "level of incorporation" and the two measures of potential access ("health insurance" and having a "usual place of care") was not modified by the control variables nor by their interaction with level of incorporation. That is, the effect of incorporation on Hispanics' health insurance coverage, and having a usual place of care, was homogenous across Hispanics with different SES and health status.^ The main research implication of this dissertation is the employment of a theoretical framework for the assessment of cultural factors essential to research on migrating heterogeneous subpopulations. It also provided strategies to solve practical and methodological difficulties in the secondary analyses of data on these populations. ^

Health outcomes, quality improvement and cost-effectiveness of the Community Diabetes Education (CoDE) program: Results of a randomized controlled trial

The objectives of this dissertation were to evaluate health outcomes, quality improvement measures, and the long-term cost-effectiveness and impact on diabetes-related microvascular and macrovascular complications of a community health worker-led culturally tailored diabetes education and management intervention provided to uninsured Mexican Americans in an urban faith-based clinic. A prospective, randomized controlled repeated measures design was employed to compare the intervention effects between: (1) an intervention group (n=90) that participated in the Community Diabetes Education (CoDE) program along with usual medical care; and (2) a wait-listed comparison group (n=90) that received only usual medical care. Changes in hemoglobin A1c (HbA1c) and secondary outcomes (lipid status, blood pressure and body mass index) were assessed using linear mixed-models and an intention-to-treat approach. The CoDE group experienced greater reduction in HbA1c (-1.6%, p<.001) than the control group (-.9%, p<.001) over the 12 month study period. After adjusting for group-by-time interaction, antidiabetic medication use at baseline, changes made to the antidiabetic regime over the study period, duration of diabetes and baseline HbA1c, a statistically significant intervention effect on HbA1c (-.7%, p=.02) was observed for CoDE participants. Process and outcome quality measures were evaluated using multiple mixed-effects logistic regression models. Assessment of quality indicators revealed that the CoDE intervention group was significantly more likely to have received a dilated retinal examination than the control group, and 53% achieved a HbA1c below 7% compared with 38% of control group subjects. Long-term cost-effectiveness and impact on diabetes-related health outcomes were estimated through simulation modeling using the rigorously validated Archimedes Model. Over a 20 year time horizon, CoDE participants were forecasted to have less proliferative diabetic retinopathy, fewer foot ulcers, and reduced numbers of foot amputations than control group subjects who received usual medical care. An incremental cost-effectiveness ratio of $355 per quality-adjusted life-year gained was estimated for CoDE intervention participants over the same time period. The results from the three areas of program evaluation: impact on short-term health outcomes, quantification of improvement in quality of diabetes care, and projection of long-term cost-effectiveness and impact on diabetes-related health outcomes provide evidence that a community health worker can be a valuable resource to reduce diabetes disparities for uninsured Mexican Americans. This evidence supports formal integration of community health workers as members of the diabetes care team.^

Differential cellular recognition pattern to M. tuberculosis targets defined by IFN-gamma and IL-17 production in blood from TB plus patients from Honduras as compared to health care workers: TB and immune responses in patients from Honduras

Background: A better understanding of the quality of cellular immune responses directed against molecularly defined targets will guide the development of TB diagnostics and identification of molecularly defined, clinically relevant M.tb vaccine candidates. Methods: Recombinant proteins (n = 8) and peptide pools (n = 14) from M. tuberculosis (M.tb) targets were used to compare cellular immune responses defined by IFN-gamma and IL-17 production using a Whole Blood Assay (WBA) in a cohort of 148 individuals, i.e. patients with TB + (n = 38), TB- individuals with other pulmonary diseases (n = 81) and individuals exposed to TB without evidence of clinical TB (health care workers, n = 29). Results: M.tb antigens Rv2958c (glycosyltransferase), Rv2962c (mycolyltransferase), Rv1886c (Ag85B), Rv3804c (Ag85A), and the PPE family member Rv3347c were frequently recognized, defined by IFN-gamma production, in blood from healthy individuals exposed to M.tb (health care workers). A different recognition pattern was found for IL-17 production in blood from M.tb exposed individuals responding to TB10.4 (Rv0288), Ag85B (Rv1886c) and the PPE family members Rv0978c and Rv1917c. Conclusions: The pattern of immune target recognition is different in regard to IFN-gamma and IL-17 production to defined molecular M.tb targets in PBMCs from individuals frequently exposed to M.tb. The data represent the first mapping of cellular immune responses against M.tb targets in TB patients from Honduras.

The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: Explanation and elaboration

Systematic reviews and meta-analyses are essential to summarize evidence relating to efficacy and safety of health care interventions accurately and reliably. The clarity and transparency of these reports, however, is not optimal. Poor reporting of systematic reviews diminishes their value to clinicians, policy makers, and other users. Since the development of the QUOROM (QUality Of Reporting Of Meta-analysis) Statement-a reporting guideline published in 1999-there have been several conceptual, methodological, and practical advances regarding the conduct and reporting of systematic reviews and meta-analyses. Also, reviews of published systematic reviews have found that key information about these studies is often poorly reported. Realizing these issues, an international group that included experienced authors and methodologists developed PRISMA ( Preferred Reporting Items for Systematic reviews and Meta-Analyses) as an evolution of the original QUOROM guideline for systematic reviews and meta-analyses of evaluations of health care interventions. The PRISMA Statement consists of a 27-item checklist and a four-phase flow diagram. The checklist includes items deemed essential for transparent reporting of a systematic review. In this Explanation and Elaboration document, we explain the meaning and rationale for each checklist item. For each item, we include an example of good reporting and, where possible, references to relevant empirical studies and methodological literature. The PRISMA Statement, this document, and the associated Web site (http://www.prisma-statement.org/) should be helpful resources to improve reporting of systematic reviews and metaanalyses.

Health care network formation and policyholders' welfare

We develop a model in which two insurers and two health care providers compete for a fixed mass of policyholders. Insurers compete in premium and offer coverage against financial consequences of health risk. They have the possibility to sign agreements with providers to establish a health care network. Providers, partially altruistic, are horizontally differentiated with respect to their physical address. They choose the health care quality and compete in price. First, we show that policyholders are better off under a competition between conventional insurance rather than under a competition between integrated insurers (Managed Care Organizations). Second, we reveal that the competition between a conventional insurer and a Managed Care Organization (MCO) leads to a similar equilibrium than the competition between two MCOs characterized by a different objective i.e. private versus mutual. Third, we point out that the ex ante providers’ horizontal differentiation leads to an exclusionary equilibrium in which both insurers select one distinct provider. This result is in sharp contrast with frameworks that introduce the concept of option value to model the (ex post) horizontal differentiation between providers.

Improving transfer of mental health care for rural and remote consumers in South Australia

In Australia, it is commonplace for tertiary mental health care to be provided in large regional centres or metropolitan cities. Rural and remote consumers must be transferred long distances, and this inevitably results in difficulties with the integration of their care between primary and tertiary settings. Because of the need to address these issues, and improve the transfer process, a research project was commissioned by a national government department to be conducted in South Australia. The aim of the project was to document the experiences of mental health consumers travelling from the country to the city for acute care and to make policy recommendations to improve transitions of care. Six purposively sampled case studies were conducted collecting data through semistructured interviews with consumers, country professional and occupational groups and tertiary providers. Data were analysed to produce themes for consumers, and country and tertiary mental healthcare providers. The study found that consumers saw transfer to the city for mental health care as beneficial in spite of the challenges of being transferred over long distances, while being very unwell, and of being separated from family and friends. Country care providers noted that the disjointed nature of the mental health system caused problems with key aspects of transfer of care including transport and information flow, and achieving integration between the primary and tertiary settings. Improving transfer of care involves overcoming the systemic barriers to integration and moving to a primary care-led model of care. The distance consultation and liaison model provided by the Rural and Remote Mental Health Services, the major tertiary provider of services for country consumers, uses a primary care-led approach and was highly regarded by research participants. Extending the use of this model to other primary mental healthcare providers and tertiary facilities will improve transfer of care.