Health-related quality of life in portuguese SLE patients: an outcome measure independent of disease activity and cumulative damage

PURPOSE: To evaluate quality of life in Portuguese patients with Systemic Lupus Erithematosus (SLE) and its correlation with disease activity and cumulative damage. METHODS: We included consecutive SLE patients, fulfilling the 1997 ACR Classification Criteria for SLE and followed at the Rheumatology Department of the University Hospital of Coimbra, Portugal at time of visit to the outpatient clinic. Quality of life was evaluated using the patient self-assessment questionnaire Medical Outcomes Survey Short Form-36 (SF-36) (validated Portuguese version). The consulting rheumatologist fulfilled the SLE associated indexes for cumulative damage (Systemic Lupus International Collaborating Clinics- Damage Index: SLICC/ACR-DI) and disease activity (Systemic Lupus Erythematosus Disease Activity Index: SLEDAI 2000). Correlation between SLEDAI and SLICC and SF-36 was tested with the Spearman Coefficient. Significant level considered was 0.05. RESULTS: The study included 133 SLE patients (90.2% female, mean age - 40.7 years, mean disease duration - 8.7 years). Most patients presented low disease activity (mean SLEDAI = 4.23) and limited cumulative damage (mean SLICC = 0.76). Despite that, SF-36 mean scores were below 70% in all eight domains of the index. Physical function domains showed lower scores than mental function domains. The QoL in this group of patients is significantly impaired when compared with the reference Portuguese population (p<0.05 in all domains). There was no correlation between clinical activity or cumulative damage and quality of life. CONCLUSION: QoL is significantly compromised in this group of SLE patients, but not related with disease activity or damage. These findings suggest that disease activity, cumulative damage and QoL are independent outcome measures and should all be used to assess the full impact of disease in SLE patients.

The Political and Social Dynamics of Poverty, Poor Relief and Health Care in Early-Modern Portugal

By the end of the fifteenth century most European countries had witnessed a profound reformation of their poor relief and health care policies. As this book demonstrates, Portugal was among them and actively participated in such reforms. Providing the first English language monograph on this topic, Laurinda Abreu examines the Portuguese experience and places it within the broader European context. She shows that, in line with much that was happening throughout the rest of Europe, Portugal had not only set up a systematic reform of the hospitals but had also developed new formal arrangements for charitable and welfare provision that responded to the changing socioeconomic framework, the nature of poverty and the concerns of political powers. The defining element of the Portuguese experience was the dominant role played by a new lay confraternity, the confraternity of the Misericórdia, created under the auspices of King D. Manuel I in 1498. By the time of the king's death in 1521 there were more than 70 Misericórdias in Portugal and its empire, and by 1640, more than 300. All of them were run according to a unified set of rules and principles with identical social objectives. Based upon a wealth of primary source documentation, this book reveals how the sixteenth-century Portuguese crown succeeded in implementing a national poor relief and health care structure, with the support of the Papacy and local elites, and funded principally through pious donations. This process strengthened the authority of the royal government at a time which coincided with the emergence of the early modern state. In so doing, the book establishes poor relief and public health alongside military, diplomatic and administrative authorities, as the pillars of centralisation of royal power.

Effect of Aging in the Perception of Health-Related Quality of Life in End-Stage Renal Disease Patients under Online-Hemodiafiltration

This work aimed to evaluate how aging could influence patients' perception of health quality of life (HRQOL), as well as, the effect of aging on dialysis adequacy and in hematological, iron status, inflammatory and nutritional markers. In this transversal study were enrolled 305 ESRD patients under online-hemodiafiltration (OL-HDF) (59.67% males; 64.9 ± 14.3 years old). Data about comorbidities, hematological data, iron status, dialysis adequacy, nutritional and inflammatory markers were collected from patient's records. Moreover, HRQOL score, by using the Kidney Disease Quality of Life-Short Form (KDQOL-SF), was assessed. Analyzing the results according to quartiles of age, significant differences were found for some parameters evaluated by the KDQOL-SF instrument, namely for work status, physical functioning and role-physical, which decreased with increasing age. We also found a higher proportion of diabetic patients, a decrease in creatinine, iron, albumin serum levels, transferrin saturation and nPCR, with increasing age. Moreover, significant negative correlations were found between age and mean cell hemoglobin concentration, iron, transferrin saturation, albumin, nPCR, work status, physical functioning and role-physical. In conclusion, our results showed that aging is associated with a decreased work status, physical functioning and role-physical, with a decreased dialysis adequacy, iron availability and nutritional status, and with an increased proportion of diabetic patients and of patients using central venous catheter, as the vascular access. The knowledge of these changes associated with aging, which have impact in the quality of life of the patients, could be useful in their management.

Social representations of nursing students about hospital assistance and primary health care

Objective: To analyze how social representations of hospital and community care are structured in two groups of nursing students – 1st and 4th years. Method: Qualitative research oriented by the Theory of Social Representations. We used a questionnaire with Free Association of Words. Data were analyzed in the Software IRaMuTeQ 0.6 alpha 3. Results: We applied the method of Descending Hierarchical Classifi cation and obtained four classes. Class 4 has the largest social representation (30.41%) within the corpus. The two organizational axes are nurse and disease/patient in the central core. On the periphery are the care and help related to the nurse and the treatment and prevention associated with the disease. Conclusion: Social representations focus on disease/patient and on the role of nurses in the treatment, prevention, and care. Health promotion and the social determinants of health are absent from the social representations of students.

Health-related quality of life and determinant factors in celiac disease: a population-based analysis of adult patients in Spain

Background: Celiac disease (CD) has a negative impact on the health-related quality of life (HRQL) of affected patients. Although HRQL and its determinants have been examined in Spanish CD patients specifically recruited in hospital settings, these aspects of CD have not been assessed among the general Spanish population. Methods: An observational, cross-sectional study of a non-randomized, representative sample of adult celiac patients throughout all of Spain's Autonomous Regions. Subjects were recruited through celiac patient associations. A Spanish version of the self-administered Celiac Disease-Quality of Life (CD-QOL) questionnaire was used. Determinant factors of HRQL were assessed with the aid of multivariate analysis to control for confounding factors. Results: We analyzed the responses provided by 1,230 patients, 1,092 (89.2%) of whom were women. The overall mean value for the CD-QOL index was 56.3 ± 18.27 points. The dimension that obtained the most points was dysphoria, with 81.3 ± 19.56 points, followed by limitations with 52.3 ± 23.43 points; health problems, with 51.6 ± 26.08 points, and inadequate treatment, with 36.1 ± 21.18 points. Patient age and sex, along with time to diagnosis, and length of time on a gluten-free diet were all independent determinant factors of certain dimensions of HRQL: women aged 31 to 40 expressed poorer HRQL while time to diagnosis and length of time on a gluten-free diet were determinant factors for better HRQL scores. Conclusions: The HRQL level of adult Spanish celiac subjects is moderate, improving with the length of time patients remain on a gluten-free diet.

Psychosocial and occupational risk perception among health care workers: a Moroccan multicenter study.

International audience

Wellbeing and occupational risk perception among health care workers: a multicenter study in Morocco and France

International audience

‘Old and ill’ : death anxiety and coping strategies influencing health professionals' well-being and dementia care

Impact of cost sharing on utilization of primary health care Services: providers versus household perspectives

This study is set to match and compare results of the analysis of impacts of cost sharing on households with those on health-care providers in two selected districts in Tanzania. The setting is intended to establish and compare concurrently the impact of cost sharing on health-care utilization as viewed from both the providers and beneficiary households. The findings of the study indicate that quality of primary health care has improved as a result of the introduction of cost sharing. Attendance and hence utilization in health facilities has also increased. Mortality rate, at least for one district has not worsened. By implication then, cost sharing appears to have a positive impact on the provision of primary health care, except for a few cases that fail to consult because of the fees. An appropriately managed exemption facility is likely to eliminate the negative impact.

Representativeness, legitimacy and power in public involvement in health-care management

Public participation in health-service management is an increasingly prominent policy internationally. Frequently, though, academic studies have found it marginalized by health professionals who, keen to retain control over decision-making, undermine the legitimacy of involved members of the public, in particular by questioning their representativeness. This paper examines this negotiation of representative legitimacy between staff and involved users by drawing on a qualitative study of service-user involvement in pilot cancer-genetics services recently introduced in England, using interviews, participant observation and documentary analysis. In contrast to the findings of much of the literature, health professionals identified some degree of representative legitimacy in the contributions made by users. However, the ways in which staff and users constructed representativeness diverged significantly. Where staff valued the identities of users as biomedical and lay subjects, users themselves described the legitimacy of their contribution in more expansive terms of knowledge and citizenship. My analysis seeks to show how disputes over representativeness relate not just to a struggle for power according to contrasting group interests, but also to a substantive divergence in understanding of the nature of representativeness in the context of state-orchestrated efforts to increase public participation. This divergence might suggest problems with the enactment of such aspirations in practice; alternatively, however, contestation of representative legitimacy might be understood as reflecting ambiguities in policy-level objectives for participation, which secure implementation by accommodating the divergent constructions of those charged with putting initiatives into practice.

The Prevalence of Depression among patients and its detection by Primary Health Care Workers at Matawale Health Centre (Zomba)

Background Little information is available on the prevalence of depression in Malawi in primary health care settings and yet there is increased number of cases of depression presenting at tertiary level in severe form. Aim The aim of the study was to determine the prevalence of depression among patients and its detection by health care workers at a primary health care clinic in Zomba. Methods A cross-sectional survey was done among patients attending outpatient department at Matawale Health Centre, in Zomba from 1st July 2009 through to 31st July 2009. A total of 350 adults were randomly selected using systematic sampling. The “Self Reporting Questionnaire”, a questionnaire measuring social demographic factors and the Structured Clinical Interview for DSM-IV Axis I disorders Non-Patient Version (SCID-NP) were administered verbally to the participants. Findings The prevalence of depression among the patients attending the outpatients department was found to be 30.3% while detection rate of depression by clinician was 0%. Conclusion The results revealed the magnitude of depression which is prevalent in the primary health care clinic that goes undiagnosed and unmanaged. It is therefore recommended that primary health care providers do thorough assessments to address common mental disorders especially depression and they should be educated to recognise and manage depression appropriately at primary care level.

Child Health Care in Ireland

The Irish health care system is based on a complex and costly mix of private, statutory, and voluntary provisions. The majority of health care expenditure comes from the state, with a significant proportion of acute hospital care funded from private insurance, but there are relatively high out-of-pocket costs for most service users. There is free access to acute hospital care, but not for primary care, for all children. About 40% of the population have free access to primary care. Universal preventive public health services, including vaccination and immunization, newborn blood spot screening, and universal neonatal hearing screening are free. Major health challenges include poverty, obesity, drug and alcohol use, and mental health. The health care system has been dominated for the last 5 years by the impact of the current recession, which has led to very sharp cuts in health care expenditure. It is unclear if the necessary substantial reform of the system will happen. Government policy calls for a move toward a patient-centered, primary care-led system, but without very substantial transfers of resources and investment in Information and Communication Technology, this is unlikely to occur. The paper has been published as part of an overall report of Child Health in Europe: Diversity of Child Health Care in Europe: A Study of the European Paediatric Association/Union of National European Paediatric Societies and Associations http://www.jpeds.com/issue/S0022-3476(16)X0010-8 . (J Pediatr 2016;177S:S87-106).  

Health Status, Living Arrangements, and Service Use at 100: Findings From the Oporto Centenarian Study

This paper describes the sociodemographic characteristics, health status, and service use of centenarians living in the community and centenarians residing in an elder care facility/nursing home and examines their main differences. Participants were 140 centenarians from the population-based Oporto Centenarian Study (Mage = 101.2; SD = 1.6). Main findings revealed that the majority of the centenarians lived at home with their family members (57.9%). Increased health care needs, living alone, and family caregiving constraints were the most common reasons for entering a nursing home. Community-dwelling centenarians were cared for mostly by their children and were less dependent and in better cognitive health than those who resided in a nursing home. Differences were found in the pattern of health service use according to the centenarians' residence, ability to pay medical expenses, and dependency level. Findings highlight the need for an accurate assessment of caregiving support systems, particularly family intergenerational duties, and of the factors constraining the access and use of health and social services. Policy makers may be guided by the insights gained from this research and work toward improvement of support options and removal of barriers to service access.