Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe

BACKGROUND: The aim of this study was to determine the social/economic costs and health-related quality of life (HRQOL) of patients with epidermolysis bullosa (EB) in eight EU member states. METHODS: We conducted a cross-sectional study of patients with EB from Bulgaria, France, Germany, Hungary, Italy, Spain, Sweden and the United Kingdom. Data on demographic characteristics, health resource utilisation, informal care, labour productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. RESULTS: A total of 204 patients completed the questionnaire. Average annual costs varied from country to country, and ranged from euro9509 to euro49,233 (reference year 2012). Estimated direct healthcare costs ranged from euro419 to euro10,688; direct non-healthcare costs ranged from euro7449 to euro37,451 and labour productivity losses ranged from euro0 to euro7259. The average annual cost per patient across all countries was estimated at euro31,390, out of which euro5646 accounted for direct health costs (18.0 %), euro23,483 accounted for direct non-healthcare costs (74.8 %), and euro2261 accounted for indirect costs (7.2 %). Costs were shown to vary across patients with different disability but also between children and adults. The mean EQ-5D score for adult EB patients was estimated at between 0.49 and 0.71 and the mean EQ-5D visual analogue scale score was estimated at between 62 and 77. CONCLUSION: In addition to its negative impact on patient HRQOL, our study indicates the substantial social/economic burden of EB in Europe, attributable mostly to high direct non-healthcare costs.

Modeling the impact of social discrimination on the physical and mental health of portuguese gay, lesbian and bisexual people

Background: Despite growing acceptance of same-sex sexuality in Portugal, identity development of lesbian, gay and bisexual (LGB) individuals is still restricted by negative societal attitudes, which maintain the experience of stigmatization and discrimination. The purpose of this study is to document the frequency of discriminatory events experienced by sexual minorities and their association with indicators of physical and mental health in Portugal. Methods: A total of 610 LGB participants completed an online survey (mean age = 34.48, SD = 11.54). Most participants were single and self-identified as gay (73.8%). The survey included five categories of survey items: demographic information, social support, physical health, mental health, and discrimination experiences. Results: Physical and mental health results revealed that bisexual people were more likely to report higher levels of psychological distress than gay men. Overall, between one-fifth and one-fourth of the participants in this sample frequently felt the need to hide their sexual orientation to prevent discrimination experiences across the different settings. Regarding actual discrimination experiences, close to 20% reported having suffered from verbal abuse, followed by close to 10% who suffered from written threats, harassment, and physical threats. A hierarchical multiple regression analysis was performed to assess the effects of anticipated and actual discrimination on mental health. Possible confounding variables were added in the first block – age, sexual orientation, being in a relationship, body mass index, and HIV status. Anticipated and actual discrimination experiences were added in the second block. The first block of the analysis explained 6% of the overall variance, while the second block – discrimination experiences – explained an additional 17%. Conclusion: Portuguese culture and stigma/discrimination create discriminatory experiences which impact LGB people’s health. Unless policies are changed to allow for the acceptance of LGB people, they will continue to experience violence and discrimination as a result of homophobia.

Non-communicable diseases among children in Ghana: health and social concerns of parent/caregivers.

Background: Globally, there is a progressive rise in the burden of non-communicable diseases (NCDs). This paper examined the health and social concerns of parents/caregivers on in-patient care for children with NCDs in Ghana. Methods: This was a cross-sectional study in three large health facilities in Ghana (the largest in the South, the largest in the North and the largest in the Eastern part of Ghana. Data was collected with a structured questionnaire among 225 caregivers (≥18 years) of 149 children with NCDs in health facilities in the three regions. Data was analyzed with simple descriptive statistics. Results: Most caregivers 169(75.0%) were women, relatively young (median age 35years), mostly married and resided in urban areas. Sickle cell disease was the commonest NCD among the children. All 169(75.0%) caregivers believed children suffer NCDs because of sins of parents/ancestors, 29(12.9%) believed herbalists/spiritualists have insights into treating NCDs and 73(32.6%) have previously used herbs/traditional medicine for child's illness. NCD in children was a burden and caused financial difficulties for families. Most caregivers (>96.0%) indicated NCDs in children should be included in national health insurance benefits package and a comprehensive national NCD policy is needed. Conclusion: Absence of national NCD policy for children is a major challenge. The burden of care rests mainly on the parents/ caregivers. A national strategic intervention on the importance of awareness generation on the causes, risk factors, prevention and treatment of NCDs for families and communities is essential. Government support through national health and social policy initiatives are essential.

Relationship of the perceived social and physical environment with mental health-related quality of life in middle-aged and older adults: mediating effects of physical activity

BACKGROUND: Mental health conditions are among the leading non-fatal diseases in middle-aged and older adults in Australia. Proximal and distal social environmental factors and physical environmental factors have been associated with mental health, but the underlying mechanisms explaining these associations remain unclear. The study objective was to examine the contribution of different types of physical activity in mediating the relationship of social and physical environmental factors with mental health-related quality of life in middle-aged and older adults. METHODS: Baseline data from the Wellbeing, Eating and Exercise for a Long Life (WELL) study were used. WELL is a prospective cohort study, conducted in Victoria, Australia. Baseline data collection took place in 2010. In total, 3,965 middle-aged and older adults (55-65 years, 47.4% males) completed the SF-36 Health Survey, the International Physical Activity Questionnaire, and a questionnaire on socio-demographic, social and physical environmental attributes. Mediation analyses were conducted using the MacKinnon product-of-coefficients test. RESULTS: Personal safety, the neighbourhood physical activity environment, social support for physical activity from family or friends, and neighbourhood social cohesion were positively associated with mental health-related quality of life. Active transportation and leisure-time physical activity mediated 32.9% of the association between social support for physical activity from family or friends and mental health-related quality of life. These physical activity behaviours also mediated 11.0%, 3.4% and 2.3% respectively, of the relationship between the neighbourhood physical activity environment, personal safety and neighbourhood social cohesion and mental health-related quality of life. CONCLUSIONS: If these results are replicated in future longitudinal studies, tailored interventions to improve mental health-related quality of life in middle-aged and older adults should use a combined strategy, focusing on increasing physical activity as well as social and physical environmental attributes.

The role of social support in protecting mental health when employed and unemployed: a longitudinal fixed-effects analysis using 12 annual waves of the HILDA cohort

Perceived social support is associated with overall better mental health. There is also evidence that unemployed workers with higher social support cope better psychologically than those without such support. However, there has been limited research about the effect of social support among people who have experienced both unemployment and employment. We assessed this topic using 12 years of annually collected cohort data. The sample included 3190 people who had experienced both unemployment and employment. We used longitudinal fixed-effects modelling to investigate within-person changes in mental health comparing the role of social support when a person was unemployed to when they were employed. Compared to when a person reported low social support, a change to medium (6.35, 95% 5.66 to 7.04, p < 0.001) or high social support (11.58, 95%, 95% CI 10.81 to 12.36, p < 0.001) was associated with a large increase in mental health (measured on an 100 point scale, with higher scores representing better mental health). When a person was unemployed but had high levels of social support, their mental health was 2.89 points (95% CI 1.67 to 4.11, p < 0.001) higher than when they were employed but had lower social support. The buffering effect of social support was confirmed in stratified analysis. There was a strong direct effect of social support on mental health. The magnitude of these differences could be considered clinically meaningful. Our results also suggest that social support has a significant buffering effect on mental health when a person is unemployed.

Statistically modelling the relationships between Type D personality and social support, health behaviors and symptom severity in chronic illness groups

OBJECTIVE: The study aimed to develop a predictive model of how Type D personality influences health behaviours, social support and symptom severity and assess its generalisability to a range of chronic illnesses.

DESIGN: Participants were classified as either healthy (n = 182) or having a chronic illness (n = 207). Participants completed an online survey measuring Type D and a range of health-related variables. Chronic illness participants were classified as having either a functional somatic syndrome (i.e. chronic fatigue syndrome or fibromyalgia), where the underlying pathological processes were unclear, or illnesses such as type 2 diabetes, osteoarthritis or rheumatoid arthritis, where the causes are well understood.

MAIN OUTCOME MEASURES: Outcome measures were health behaviours, social support and both physical and psychological symptoms.

RESULTS: The rate of Type D was higher in chronic illness participants (53%) than in healthy controls (39%). Negative affectivity (NA) and social inhibition (SI) both correlated with outcome measures, although NA was generally the stronger predictor. Using NA and SI as independent subscales led to superior prediction of health outcomes than using categorical or continuous representations.

CONCLUSION: Findings suggest that the relationship between Type D and health outcomes may generalise across different chronic illnesses.

A rotational social work field placement model in regional health

Increases in student numbers and education providers have combined with pressures on the human services sector to create field-placement-shortage stress in many parts of Australia. In this climate some Australian social work programs have sought alternatives to the traditional, labour-intensive, one student/one field educator, single-site model of field placement. The rotation model, as an alternative, has a longer history in America, but is only recently being trialled and evaluated in Australia.

Science, research and social change in Indigenous health – evolving ways of knowing

History tells us of the overwhelming destructive influence of exotic culture, politics and knowledge forms upon the worldview and wellbeing of Indigenous Australians. The power of dominant culture to oppress, control and dominate traditional Indigenous ways of knowing and being has been identified as a being a crucial influence on the health status, future hopes and aspirations of Indigenous Australians. Fundamental to this assertion is that the alienating effect of the belief in and application of the scientific method in relation to learning and knowing is a phenomenon that is incompatible with the law and cultural ways of traditional Indigenous people. The establishment of the Centre of Clinical Research Excellence (CCRE) is predicated upon and responds to a deep need in our community today to synthesise the ideological and epistemological premises of an increasing range of cultures and world views. It recognises that clinical research, for example, is important to the health of Aboriginal and Torres Strait Islander peoples, but also that the way such research is designed and carried out is also crucial to its potential to effect change in and improve the state of Indigenous health in Australia. This paper examines knowledge principles and processes associated with research in Indigenous communities, explores emerging research trends in science and proposes an epistemological framework for synthesis of traditional approaches with those of the scientific paradigm.

Social determinants of health - why we continue to ignore them in the search for improved population health outcomes!

There is now unequivocal evidence that the health status of individuals and of whole communities is socially and economically determined, as are many other aspects of our lives. This suggests, as advocates of public health and population health approaches argue, that our efforts in managing our health and wellbeing should focus much more on early intervention and prevention programs than has been the case to date. However, although this ideology of social and economic determinism is generally accepted, practice does not reflect such values. Indeed, as increasing demand at the critical end of health service provision sees us spending more and more of our limited health care resources on acute and chronic illness, less resources are devoted to constructing and maintaining health-creating communities and environments. Paradoxically, while most of our leaders, academics and policy makers have themselves been nurtured in a sound understanding of cause and effect in the world, they are ignoring these fundamental premises in their approaches to the provision and management of health care. This paper explores some of the reasons why this might be the case and draws on key evidence to suggest that the time has come for us to think more ideologically in approaching health care in the future.

Age and gender differences in the influence of social support on mental health : a longitudinal fixed-effects analysis using 13 annual waves of the HILDA cohort

OBJECTIVES: Perceived social support is associated with better mental health. There has been limited attention to how these relationships are modified by age and gender. We assessed this topic using 13 years of cohort data. STUDY DESIGN: Prospective cohort study. METHODS: The outcome was the Mental Health Inventory-5 (MHI-5), a reliable and valid screening instrument for mood disorders. The main exposure was a social support scale composed of 10 items. We used longitudinal fixed-effects regression modelling to investigate within-person changes in mental health. Analytic models controlled for within-person sources of bias. We controlled for time-related factors by including them into regression modelling. RESULTS: The provision of higher levels of social support was associated with greater improvements in mental health for people aged under 30 years than for older age groups. The mental health of females appeared to benefit slightly more from higher levels of social support than males. Improvements in the MHI-5 were on a scale that could be considered clinically significant. CONCLUSIONS: The benefits of social support for young people may be connected to age-related transitions in self-identity and peer friendship networks. Results for females may reflect their tendency to place greater emphasis on social networks than males.

The Impact of Social Comparison Processes on Hoped-For Possible Selves, Self-Regulatory Processes, and Mental Health Outcomes in Young Adults

In exploring the role of social influences in the development of the self, the current study evaluated whether young adults use social comparisons in developing their hoped-for possible selves and, if so, whether their developmental process correlates with self-regulatory processes and positive mental health outcomes. The current study found the following: (1) the domains of hoped-for possible selves among young adults were related to the gender of the social comparison target, (2) the direction of young adults’ social comparison processes (upward or downward) did not significantly influence self-regulatory processes (self-efficacy and outcome expectancy) toward achieving their hoped-for possible selves, (3) strong masculine gender identification related to greater outcome expectancy, while strong feminine gender identification related to both greater self-efficacy and outcome expectancy, and (4) self-efficacy related to less state anxiety, trait anxiety, and depression, while outcome expectancy related only to less trait anxiety. Males and females were found to use traditional gender role identification in forming their hoped-for possible selves.

The impact of trans fat regulation on social inequalities in coronary heart disease in Australia

To The Editor: The evidence that industrially produced trans fatty acids (TFAs) increase the risk of coronary heart disease is compelling, and it is widely agreed that their use in food products should be minimised.1-3 Dietary TFAs are generally found in higher quantities in “unhealthy” food products,4 consumption of which is also found to follow predictable sociodemographic patterns.5 Thus, although the average TFA intake for Australians is relatively low, socioeconomically disadvantaged people are likely to disproportionately represent those with above average intakes.

Social media bodies : revealing the entanglement of sexual well-being, mental health, and social media in education

While media and youth research reveal the intersectionality of young people’s sexual well-being, mental health, and social media practices, little attention has been paid to how this entanglement is addressed in education. Pedagogy that is not informed by a nuanced and interconnected understanding of young people’s everyday experiences of sexual well-being, mental health, and social media is likely to be ineffective and inadequate. I describe a workshop activity with young people experiencing mental ill health that uses bodies as a metaphor for social media, allowing participants to reveal and discuss their experiences, attitudes, and values through dressing up and illustrating “social media bodies.” I outline three themes that arose from the workshops: revealing and destabilising affordances, the spatial and temporal affordances of social media, and young people’s affective relationships through and with social media, and advocate for an intersectional approach to sexuality education, one that is necessarily complex and ambivalent.

Examining health literacy disparities in the United States: a third look at the National Assessment of Adult Literacy (NAAL)

BACKGROUND: In the United States, disparities in health literacy parallel disparities in health outcomes. Our research contributes to how diverse indicators of social inequalities (i.e., objective social class, relational social class, and social resources) contribute to understanding disparities in health literacy.

METHODS: We analyze data on respondents 18 years of age and older (N = 14,592) from the 2003 National Assessment of Adult Literacy (NAAL) restricted access data set. A series of weighted Ordinary Least Squares (OLS) regression models estimate the association between respondent's demographic characteristics, socioeconomic status (SES), relational social class, social resources and an Item Response Theory (IRT) based health literacy measure.

RESULTS: Our findings are consistent with previous research on the social and SES determinants of health literacy. However, our findings reveal the importance of relational social status for understanding health literacy disparities in the United States. Objective indicators of social status are persistent and robust indicators of health literacy. Measures of relational social status such as civic engagement (i.e., voting, volunteering, and library use) are associated with higher health literacy levels net of objective resources. Social resources including speaking English and marital status are associated with higher health literacy levels.

CONCLUSIONS: Relational indicators of social class are related to health literacy independent of objective social class indicators. Civic literacy (e.g., voting and volunteering) are predictors of health literacy and offer opportunities for health intervention. Our findings support the notion that health literacy is a social construct and suggest the need to develop a theoretically driven conceptual definition of health literacy that includes a civic literacy component.