El costo de la atención ambulatoria del lupus eritematoso sistémico en Colombia. Contrastes y comparaciones con otras poblaciones.

Introducción: el lupus eritematoso sistémico (LES) es considerado una enfermedad de alto costo. La expresión clínica de la enfermedad depende de la ubicación geografía y la etnicidad. El objetivo de este estudio fue el calcular los costos ambulatorios relacionado al LES en una cohorte colombiana, identificar los predictores de costos y comparar nuestro resultados con otras poblaciones. Métodos: Se realizó una aproximación de tipo prevalencia en 100 pacientes LES en quienes se evaluaron los costos directos médicos, directos no médicos, indirectos e intangibles. Todos los costos médicos fueron evaluados usando una metodología abajo hacia arriba. Los costos directos fueron valorados desde una perspectiva social usando una metodología de micro-costeo. Los costos indirectos se evaluaron mediante una aproximación de capital humano, y los costos intangibles calculados a partir de los años de vida ajustados por calidad (AVAC). Se analizaron los datos por medio de un análisis multivariado. Para comparaciones con otras poblaciones todos los costos fueron expresados como la razón entre los costos y producto interno bruto nacional per cápita. Resultados: La media de costos totales fue 13.031±9.215 USD (ajustados por el factor de conversión de paridad del poder adquisitivo), lo cual representa el 1,66 del PIB per capita de Colombia. Los costos directos son el 64% de los costos totales. Los costos médicos representan el 80% de los costos directos,. Los costos indirectos fueron el 10% y los costos intangibles el 25% de los costos totales. Los medicamentos representaron el 45% de los costos directos. Mayores costos se relacionaron con el estrato socioeconómico, seguro médico privado, AVAC, alopecia, micofenolato mofetilo, y terapia anticoagulante. Los costos directos ajustados de los pacientes con LES en Colombia fueron mayores que en Norte América y en Europa. Conclusiones: el LES impone una carga económica importante para la sociedad. Los costos relacionados con la atención médica y AVAC fueron los principales contribuyentes al alto costo de la enfermedad. Estos resultados pueden ser referencia para determinar políticas en salud pública así como comparar el gasto en salud de forma internacional.

Global priority setting for Cochrane systematic reviews of health promotion and public health research

Background: Systematic reviews of health promotion and public health interventions are increasingly being conducted to assist public policy decision making. Many intra-country initiatives have been established to conduct systematic reviews in their relevant public health areas. The Cochrane Collaboration, an international organisation established to conduct and publish systematic reviews of healthcare interventions, is committed to high quality reviews that are regularly updated, published electronically, and meeting the needs of the consumers.

Aims: To identify global priorities for Cochrane systematic reviews of public health topics.

Methods: Systematic reviews of public health interventions were identified and mapped against global health risks. Global health organisations were engaged and nominated policy-urgent titles, evidence based selection criteria were applied to set priorities.

Results: 26 priority systematic review titles were identified, addressing interventions such as community building activities, pre-natal and early infancy psychosocial outcomes, and improving the nutrition status of refugee and displaced populations.

Discussion: The 26 priority titles provide an opportunity for potential reviewers and indeed, the Cochrane Collaboration as a whole, to address the previously unmet needs of global health policy and research agencies.

Caring for individuals with an eating disorder

A longitudinal study indicated that carers experienced long-term moderate levels of psychological distress and burden. High levels of negative expressed emotion, use of maladaptive coping strategies and unmet needs predicted burden longitudinally. Further, eating disorder sufferers underestimate the burden experienced by carers. The results support the use of carer-based intervention.

Diabetes MILES – The Netherlands: rationale, design and sample characteristics of a national survey examining the psychosocial aspects of living with diabetes in Dutch adults

Background : As the number of people with diabetes is increasing rapidly worldwide, a more thorough understanding of the psychosocial aspects of living with this condition has become an important health care priority. While our knowledge has grown substantially over the past two decades with respect to the physical, emotional and social difficulties that people with diabetes may encounter, many important issues remain to be elucidated. Under the umbrella of the Diabetes MILES (Management and Impact for Long-term Empowerment and Success) Study International Collaborative, Diabetes MILES – The Netherlands aims to examine how Dutch adults with diabetes manage their condition and how it affects their lives. Topics of special interest in Diabetes MILES - The Netherlands include subtypes of depression, Type D personality, mindfulness, sleep and sexual functioning.

Methods/design : Diabetes MILES – The Netherlands was designed as a national online observational study among adults with diabetes. In addition to a main set of self-report measures, the survey consisted of five complementary modules to which participants were allocated randomly. From September to October 2011, a total of 3,960 individuals with diabetes (40% type 1, 53% type 2) completed the battery of questionnaires covering a broad range of topics, including general health, self-management, emotional well-being and contact with health care providers. People with self-reported type 1 diabetes (specifically those on insulin pump therapy) were over-represented, as were those using insulin among respondents with self-reported type 2 diabetes. People from ethnic minorities were under-represented. The sex distribution was fairly equal in the total sample, participants spanned a broad age range (19–90 years), and diabetes duration ranged from recent diagnosis to living with the condition for over fifty years.

Discussion : The Diabetes MILES Study enables detailed investigation of the psychosocial aspects of living with diabetes and an opportunity to put these findings in an international context. With several papers planned resulting from a pooled Australian-Dutch dataset and data collections planned in other countries, the Diabetes MILES Study International Collaborative will contribute substantially to identifying potentially unmet needs of those living with diabetes and to inform clinical research and care across the globe.

A tailored, supportive care intervention using systematic assessment designed for people with inoperable lung cancer: a randomised controlled trial

Objective : People with inoperable lung cancer experience higher levels of distress, more unmet needs and symptoms than other cancer patients. There is an urgent need to test innovative approaches to improve psychosocial and symptom outcomes in this group. This study tested the hypothesis that a tailored, multidisciplinary supportive care programme based on systematic needs assessment would reduce perceived unmet needs and distress and improve quality of life.

Methods : A randomised controlled trial design was used. The tailored intervention comprised two sessions at treatment commencement and completion. Sessions included a self-completed needs assessment, active listening, self-care education and communication of unmet psychosocial and symptom needs to the multidisciplinary team for management and referral. Outcomes were assessed with the Needs Assessment for Advanced Lung Cancer Patients, Hospital Anxiety and Depression Scale, Distress Thermometer and European Organization of Research and Treatment of Cancer Quality of Life Q-C30 V2.0.

Results : One hundred and eight patients with a diagnosis of inoperable lung or pleural cancer (including mesothelioma) were recruited from a specialist facility before the trial closed prematurely (original target 200). None of the primary contrasts of interest were significant (all p > 0.10), although change score analysis indicated a relative benefit from the intervention for unmet symptom needs at 8 and 12 weeks post-assessment (effect size = 0.55 and 0.40, respectively).

Conclusion : Although a novel approach, the hypothesis that the intervention would benefit perceived unmet needs, psychological morbidity, distress and health-related quality of life was not supported overall.

Intensive case management for high-risk patients with first-episode psychosis: service model and outcomes

Background : The first episode of psychosis is a crucial period when early intervention can alter the trajectory of the young person's ongoing mental health and general functioning. After an investigation into completed suicides in the Early Psychosis Prevention and Intervention Centre (EPPIC) programme, the intensive case management subprogramme was developed in 2003 to provide assertive outreach to young people having a first episode of psychosis who are at high risk owing to risk to self or others, disengagement, or suboptimal recovery. We report intensive case management model development, characterise the target cohort, and report on outcomes compared with EPPIC treatment as usual.

Methods : Inclusion criteria, staff support, referral pathways, clinical review processes, models of engagement and care, and risk management protocols are described. We compared 120 consecutive referrals with 50 EPPIC treatment as usual patients (age 15–24 years) in a naturalistic stratified quasi-experimental real-world design. Key performance indicators of service use plus engagement and suicide attempts were compared between EPPIC treatment as usual and intensive case management, and psychosocial and clinical measures were compared between intensive case management referral and discharge.

Findings : Referrals were predominately unemployed males with low levels of functioning and educational attainment. They were characterised by a family history of mental illness, migration and early separation, with substantial trauma, history of violence, and forensic attention. Intensive case management improved psychopathology and psychosocial outcomes in high-risk patients and reduced risk ratings, admissions, bed days, and crisis contacts.

Interpretation : Characterisation of intensive case management patients validated the clinical research focus and identified a first episode of psychosis high-risk subgroup. In a real-world study, implementation of an intensive case management stream within a well-established first episode of psychosis service showed significant improvement in key service outcomes. Further analysis is needed to determine cost savings and effects on psychosocial outcomes. Targeting intensive case management services to high-risk patients with unmet needs should reduce the distress associated with pathways to care for patients, their families, and the community.

Social Panorama of Latin America 1999-2000

Includes bibliography

Ageing and the protection of human rights: Current situation and outlook

Includes Bibliography

COMPARATIVE STUDY OF INFORMAL HEALTH CARE NETWORKS AND ELDERLY HEALTH STATUS IN ARGENTINA AND CUBA

This study will explore familial and friend support networks and living arrangements among elderly individuals in Latin America and the impact that this type of support has on the health of the elderly individuals in the countries of interest. Using data from the Survey on Health and Well-Being of Elders (SABE) from 1999-2000, I will explore which type of support has a larger impact on overall health. I will also measure differences in unmet needs for certain health services. This topic is particularly interesting because it will help to uncover what policies are best for aiding in the healthcare of the elderly in aging population. Lastly, the investigation of this topic will allow me to draw conclusions about the most effective means of social and public policy for the elderly community and provide me with information about the role of both informal provisions of support from family and friends, and formal provisions of support from the government. My primary focus will be on Argentina, using Buenos Aires as the sample city, and Cuba, using Havana as the sample city. These two countries have increasingly aging populations, poorer resources and vast inequalities, but, extremely different political, economic and cultural situations. Comparing the two countries will further allow me to determine correlations between health and the existence of support networks, as well as provide me with information to make more general claims that may be of use in the United States. Argentina is particularly interesting to me because of my abroad experience and homestay experience with an older Argentine woman who lived alone but depended upon her family for many healthcare needs, doctors’ visits and general well-being. In Argentina, I experienced a different form of living than I am used to in the United States, where many older individuals or couples live in nursing homes or assisted living facilities rather than alone or with family. The changing economic climate of the two countries coupled with labor patterns of women returning to work at rapid rates indicates that policies cannot just rely on either the formal or informal sector but require a combination of the two sectors working together.This paper will first give background on the difference in the economies and the health care systems in Argentina and Cuba and will show why it interesting to study and compare these two countries. I will then discuss the health status of the elderly in each population as well as discuss the informal care networks and the role of family in each country. This section will then be followed by a description of the data and methods used. I will end by drawing conclusions about the study and the outcomes, and then I will attempt to make suggestions about effective health care policies for the elderly.

Exploring Assistance in Sweden and the United States

Few international comparisons of health services are performed using microlevel data. Using such data, this paper compares the need for and receipt of assistance with activities of daily living (ADLs) in comparable samples in the United States and Sweden, a country with a universal system of community-based services.Design and Methods: Data from national surveys of community residents completed at approximately the same time in each nation are used to create comparable measures of need and assistance. Descriptive and logistic regression analyses compare need and assistance patterns across the nations and identify individual factors that explain receipt of assistance and unmet needs.Results:Our results indicate that a simple story of greater use of paid formal services in Sweden and more unpaid informal use in the United States masks a more complex relationship. Assistance with ADLs seems to be more targeted in Sweden; narrow differences in assistance widen considerably when the analysis is limited to those reporting need. Implications:Although these two different health systems result in similar levels of overall ADL assistance, a detailed microlevel comparison reveals key distinctions. Further microlevel comparisons of access, cost, and quality in cross-national data can further aid our understanding of the consequences of health policy.

Does Mental Illness Affect Consumer Direction of Community-Based Care? Lessons From the Arkansas Cash and Counseling Program

Purpose: Previous research from the Cash and Counseling Demonstration and Evaluation (CCDE) in Arkansas, New Jersey, and Florida suggests that giving consumers control over their personal care greatly increases their satisfaction and improves their outlook on life. Still, some argue that consumerdirected care may not be appropriate for consumers with intellectual disabilities or mental health diagnoses. This study examined how Cash and Counseling— a new option allowing consumers to manage an individualized budget equivalent to what agencies would have spent on their care—changes the way consumers with mental health diagnoses meet their personal care needs and how that affects their wellbeing. Design and Methods: Using the Arkansas CCDE baseline and the 9-month follow-up data for individuals in the treatment and control groups, we compared and contrasted the experience of elderly consumers with and without mental health diagnoses utilizing logit regression. Results: After examining several outcome measures, including satisfaction with care arrangements and the paid caregiver’s reliability and schedule, unmet needs, and satisfaction with the relationship with paid caregivers, this study found evidence that, from the perspective of consumers, the Cash and Counseling program works well for participants with mental health diagnoses. Implications: Considering the growing need for long-term-care services and the limited resources available, a consumer-directed option makes sense, and it can be a valuable alternative for persons with mental health needs.

Important research questions in allergy and related diseases: nonallergic rhinitis: a GA2LEN paper

Nonallergic rhinitis (NAR) can be defined as a chronic nasal inflammation which is not caused by systemic IgE-dependent mechanisms. It is common and probably affects far more than 200 million people worldwide. Both children and adults are affected. However, its exact prevalence is unknown and its phenotypes need to be evaluated using appropriate methods to better understand its pathophysiology, diagnosis and management. It is important to differentiate between infectious rhinitis, allergic/NAR and chronic rhinosinusitis, as management differs for each of these cases. Characterization of the phenotype, mechanisms and management of NAR represents one of the major unmet needs in allergic and nonallergic diseases. Studies on children and adults are required in order to appreciate the prevalence, phenotype, severity and co-morbidities of NAR. These studies should compare allergic and NAR and consider different age group populations including elderly subjects. Mechanistic studies should be carried out to better understand the disease(s) and risk factors and to guide towards an improved diagnosis and therapy. These studies need to take the heterogeneity of NAR into account. It is likely that neuronal mechanisms, T cells, innate immunity and possibly auto-immune responses all play a role in NAR and may also contribute to the symptoms of allergic rhinitis.

Workfare Work: The Impact of Workfare on the Worker/Client Relationship

This article details the American experience of welfare reform, and specifically its experience instituting workfare programs for participants. In the United States, the term "welfare" is most commonly used to refer to the program for single mothers and their families, formerly called Aid to Families with Dependent Children (AFDC) and now, Temporary Assistance to Needy Families (TANF). In 1996, politicians "ended welfare as we know it" by fundamentally changing this program with the passage of the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (PRWORA). The principal focus of the 1996 reform is mandatory work requirements enforced by sanctions and strict time limits on welfare receipt. While PRWORA's emphasis on work is not new, the difference is its significant ideological and policy commitment to employment, enforced by time limits. When welfare reform was enacted, some of its proponents recognized that welfare offices would have to change in order to develop individualized workfare plans, monitor progress, and impose sanctions. The "culture" of welfare offices had to be changed from being solely concerned with eligibility and compliance to individual, intensive casework. In this article, I will discuss how implementing workfare programs have influenced the relationship between clients and their workers at the welfare office. I start by describing the burdens faced by offices even before the enactment of welfare reform. Local welfare offices were expected to run programs that emphasized compliance and eligibility at the same time as workfare programs, which require intensive, personal case management. The next section of the paper will focus on strategies welfare offices and workers use to navigate these contradictory expectations. Lastly, I will present information on how clients react to workfare programs and some reasons they acquiesce to workfare contracts despite their unmet needs. I conclude with recommendations of how to make workfare truly work for welfare clients.

Skin and mucosa care in systemic sclerosis - patients' and family caregivers' experiences and expectations of a specific education programme: a qualitative study

BACKGROUND Skin and mucosal manifestations such as skin thickening, pruritus, reduced microvascular circulation, digital lesions, appearance-related changes, and dryness of the eyes and mucosa are common in systemic sclerosis (SSc). A specific skin and mucosa care education programme for patients and their family caregivers should increase their self-efficacy and improve coping strategies. AIMS The aims of this qualitative study were to explore the participants' experiences of both everyday life with skin and mucosal manifestations and the programme itself, while identifying unmet needs for programme development. METHODS Narrative interviews were conducted with eight SSc patients and two family caregivers of individuals with SSc. Using qualitative content analysis techniques, the transcribed interviews were systematically summarized and categories inductively developed. RESULTS The findings illustrated participants' experiences of skin and mucosal symptoms and revealed them to be experts in finding the right therapy mix alone (before diagnosis) and also in collaboration with health professionals (after diagnosis). Participants emphasized that the programme gave them useful education on skin and mucosa care. They described how they had to cope alone with the lack of information on pathophysiology, people's reactions, and the impact on their family and working lives. Nevertheless, participants said that they maintained a positive attitude by not dwelling on future disabilities. CONCLUSIONS Patients and family caregivers benefited from the individualized and SSc-specific education on skin and mucosa care. Future improvements to the programme should focus on imparting understandable information on SSc pathophysiology, dealing with disfigurement and seeking reliable disease information, as well as facilitating peer support.

Improving the health and well-being of women at risk for neural tube defect recurrence

There is growing interest in providing women with internatal care, a package of healthcare and ancillary services that can improve their health during the period after the termination of one pregnancy but before the conception of the next pregnancy. Women who have had a pregnancy affected by a neural tube defect can especially benefit from internatal care because they are at increased risk for recurrence and improvements to their health during the inter-pregnancy period can prevent future negative birth outcomes. The dissertation provides three papers that inform the content of internatal care for women at risk for recurrence by examining descriptive epidemiology to develop an accurate risk profile of the population, assessing whether women at risk for recurrence would benefit from a psychosocial intervention, and determining how to improve health promotion efforts targeting folic acid use.^ Paper one identifies information relevant for developing risk profiles and conducting risk assessments. A number of investigations have found that the risk for neural tube defects differs between non-Hispanic Whites and Hispanics. To understand the risk difference, the descriptive epidemiology of spina bifida and anencephaly was examined for Hispanics and non-Hispanic Whites based on data from the Texas Birth Defects Registry for the years 1999 through 2004. Crude and adjusted birth prevalence ratios and corresponding 95% confidence intervals were calculated between descriptive epidemiologic characteristics and anencephaly and spina bifida for non-Hispanic Whites and for Hispanics. In both race/ethnic groups, anencephaly expressed an inverse relationship with maternal age and a positive linear relationship with parity. Both relationships were stronger in non-Hispanic Whites. Female infants had a higher risk for anencephaly in non-Hispanic Whites. Lower maternal education was associated with increased risk for spina bifida in Hispanics.^ Paper two assesses the need for a psychosocial intervention. For mothers who have children with spina bifida, the transition to motherhood can be stressful. This qualitative study explored the process of becoming a mother to a child with spina bifida focusing particularly on stress and coping in the immediate postnatal environment. Semi-structured interviews were conducted with six mothers who have children with spina bifida. Mothers were asked about their initial emotional and problem-based coping efforts, the quality and kind of support provided by health providers, and the characteristics of their meaning-based coping efforts; questions matched Transactional Model of Stress and Coping (TMSC) constructs. Analysis of the responses revealed a number of modifiable stress and coping transactions, the most salient being: health providers are in a position to address beliefs about self-causality and prevent mothers from experiencing the repercussions that stem from maintaining these beliefs. ^ Paper three identifies considerations when creating health promotion materials targeting folic acid use. A brochure was designed using concepts from the Precaution Adoption Process Model (PAPM). Three focus groups comprising 26 mothers of children with spina bifida evaluated the brochure. One focus group was conducted in Spanish-only, the other two focus groups were conducted in English and Spanish combined. Qualitative analysis of coded transcripts revealed that a brochure is a helpful adjunct. Questions about folic acid support the inclusion of an insert with basic information. There may be a need to develop different educational material for Hispanics so the importance of folic acid is provided in a situational context. Some participants blamed themselves for their pregnancy outcome which may affect their receptivity to messages in the brochure. The women's desire for photographs that affect their perception of threat and their identification with the second role model indicate they belong to PAPM Stage 2 and 3. Participants preferred colorful envelopes, high quality paper, intimidating photographs, simple words, conversational style sentences, and positive messages.^ These papers develop the content of risk assessment, psychosocial intervention, and health promotion components of internatal care as they apply to women at risk for recurrence. The findings provided evidence for considering parity and maternal age when assessing nutritional risk. The two dissimilarities between the two race/ethnic groups, infant sex and maternal education lent support to creating separate risk profiles. Interviews with mothers of children with spina bifida revealed the existence of unmet needs-suggesting that a psychosocial intervention provided as part of internatal care can strengthen and support women's well-being. Segmenting the audience according to race/ethnicity and PAPM stage can improve the relevance of print materials promoting folic acid use.^