罕见病患者社会支持与生命质量的关系研究

目的:利用2016年中国罕见病群体生存状况调查数据,通过分析罕见病患者生命质量各维度现状及其与社会支持的关系,为完善罕见病患者社会保障政策提供参考。方法:评价工具采用WHOQOL-BREF量表,运用滚雪球抽样调查方法,通过网络和电话调查方式收集数据,采用t检验分析与中国常模数据进行比较,并使用线性回归模型考察非正式、正式社会支持与罕见病患者生命质量的关系。结果:罕见病患者生命质量的各维度得分(生理、心理、社会、环境领域)均显著低于中国常模正常组和疾病组的生命质量评价得分,说明罕见病对居民的生命质量负面影响显著。非正式和正式社会支持与罕见病患者生命质量相关,非正式社会支持水平越高,患者各领域的生命质量越好;曾接受过社会帮扶的患者,心理领域和社会领域的生活质量水平高于未曾接受的患者。结论:改善患者的社会支持水平,完善罕见病的社会保障政策,对提高患者的生命福祉有一定的意义。     

Steep Decrease of Gender Difference in DSM-IV Alcohol Use Disorder: A Comparison of Two Nation-wide Surveys Conducted 10 Years Apart in Korea

While decreasing trend in gender differences in alcohol use disorders was reported in Western countries, the change in Asian countries is unknown. This study aims to explore the shifts in gender difference in alcohol abuse (AA) and dependence (AD) in Korea. We compared the data from two nation-wide community surveys to evaluate gender differences in lifetime AA and AD by Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV). Face-to-face interviews using the Composite International Diagnostic Interview (CIDI) were applied to all subjects in 2001 (n=6,220) and 2011 (n=6,022). Male-to-female ratio of odds was decreased from 6.41 (95% CI, 4.81-8.54) to 4.37 (95% CI, 3.35-5.71) for AA and from 3.75 (95% CI, 2.96-4.75) to 2.40 (95% CI, 1.80-3.19) for AD. Among those aged 18-29, gender gap even became statistically insignificant for AA (OR, 1.59; 95% CI, 0.97-2.63) and AD (OR, 1.18; 95% CI, 0.80-2.41) in 2011. Men generally showed decreased odds for AD (0.55; 95% CI, 0.45-0.67) and women aged 30-39 showed increased odds for AA (2.13; 95% CI 1.18-3.84) in 2011 compared to 2001. Decreased AD in men and increased AA in women seem to contribute to the decrease of gender gap. Increased risk for AA in young women suggests needs for interventions.     

Competition among pharmacies and the typology of services delivered: The Portuguese case

ObjectiveTo analyze the impact of individual and market characteristics (such as competition) on the typology of services delivered by a community pharmacy after a recent Portuguese pro-competitive regulatory change.MethodsIn this paper, market concentration indices are used to identify market competition groups in the sample. These competition groups are then described with regard to the typology of services on offer by pharmacies within the group. Finally, a system of structural equations is estimated to verify if the decision of a pharmacy to offer or not to offer each of the studied pharmaceutical services is affected by local market regulated competition.ResultsIn some cases, pharmacies belonging to different competition groups do not present significant differences in terms of the typology of services on offer, but according to our regressions, it seems that vaccines and medicines administration services, pharmaceutical care programmes and medicines management programmes are more likely to be offered in pharmacies located in higher competitive markets. These are also urban areas, in which there is already easy access to products sold in pharmacies, and to health services in general.ConclusionsAccess to additional pharmacy services may in some cases increase as market competition increases. Thus, pro-competitive regulatory measures may have led to an asymmetric distribution of pharmacy services across the country, favouring more competitive urban marketplaces. If policy-makers are interested in a more symmetrical distribution of pharmacies services all over the country, they are recommended to take action to ensure equitable access to these services.     

Empowerment through care: Using dialogue between the social model of disability and an ethic of care to redraw boundaries of independence and partnership between disabled people and services

Our approach – empowerment through care – emerges from dialogue between social model understandings of empowerment and ethic of care based understandings of care. Whilst maintaining the principles underpinning empowerment as a challenge to disabling practice within health, social care and voluntary sector organisations, empowerment through care challenges a rejection of “care” as necessarily oppressive. We emphasise that relationships characterised by Tronto's (1993) elements of care can facilitate individual empowerment by redrawing boundaries of independence and partnership between people accessing support, professionals and the organisations within which they operate. Alongside a theoretical argument for our approach, we draw upon empirical evidence from two practice-based settings. Both settings demonstrate the importance of relational autonomy, based on Tronto's framework, in realising service imperatives rooted in empowerment. We also draw upon seminar discussion data, which demonstrates a pathway to empowerment: beginning with the individual, rooted in dialogue and embedded in whole organisations. Our approach establishes fresh ways for disabled people and services to work together in establishing innovative approaches to support and relationships at all levels of services.     

Quality of life in caregivers of a family member with serious mental illness: Evidence from China

Purpose

To evaluate the quality of life (QoL) and social support among family caregivers of a family member with a mental illness and to identify factors associated with the QoL.

Sex differences in neural mechanisms of social and non-social threat monitoring

Adolescent males and females differ in their responses to social threat. Yet, threat processing is often probed in non-social contexts using the error-related negativity (ERN; Flanker EEG Task), which does not yield sex-specific outcomes. fMRI studies show inconsistent patterns of sex-specific neural engagement during threat processing. Thus, the relation between threat processing in non-social and social contexts across sexes and the effects perceived level of threat on brain function are unclear. We tested the interactive effect of non-social threat-vigilance (ERN), sex (N = 69; Male=34; 11–14-year-olds), and perceived social threat on brain function while anticipating feedback from ‘unpredictable’, ‘nice’, or ‘mean’ purported peers (fMRI; Virtual School Paradigm). Whole-brain analyses revealed differential engagement of precentral and inferior frontal gyri, putamen, anterior cingulate cortex, and insula. Among males with more threat-vigilant ERNs, greater social threat was associated with increased activation when anticipating unpredictable feedback. Region of interest analyses revealed this same relation in females in the amygdala and anterior hippocampus when anticipating mean feedback. Thus, non-social threat vigilance relates to neural engagement depending on perceived social threat, but peer-based social contexts and brain regions engaged, differ across sexes. This may partially explain divergent psychosocial outcomes in adolescence.     

Investigating attention in young adults with autism spectrum disorder (ASD) using change blindness and eye tracking

BackgroundSocial interaction at its core entails allocating attention to relevant stimuli. As such, the perception of change requires attention, but studies have suggested that the social impairment in people with autism spectrum disorder (ASD) occurs at the attentual level of "on-line" social cognition.MethodForty-four young adults—22 with autism spectrum disorder (ASD) and 22 with typical development (TD)—participated in two experiments. The first used a change blindness (CB) paradigm where attention was investigated through the detection of changed items with central and marginal levels of interest when viewing images of everyday scenarios. Eye-tracking was used to compare response times, first fixations and total fixation time on changes. The second used social films with eye tracking of gaze fixations.ResultsParticipants with ASD were slower in response time and first fixation than were participants with TD. Participants with TD showed longer fixation on items with marginal (compared to central) levels of interest. The social-film experiment showed that participants with ASD were slower to orient their gazes towards the characters’ faces and looked at speaking characters for less time than did the group with TD. This result correlates with less use of mental verbs in their narratives and less time spent looking at marginal items in the CB experiment.ConclusionsResults suggest reduced processing speed in young adults with ASD, which is associated with enhanced processing of local details. Clinically, these results imply that teaching strategies (e.g., cognitive cues) to process social context efficiently could benefit individuals with ASD.     

The opportunity costs of caring for people with dementia in Southern Spain

Objective

The aim of this paper is to study the opportunity costs (OC) that are involved in being a caregiver and to compare them with the direct costs assumed by the State and the families. We evaluate direct cost (those that imply a payment-out-of-pocket) and indirect cost (those that imply a dedication in time). We hypothesized that costs increase with the severity of the dementia, with the educational level and active occupational situation of caregiver. They are greater if the caregiver is male, but if the patient and caregiver cohabit they are reduced.

Determinantes sociales de la salud de distintos niveles por género: educación y hogar en España

Objective

To explore from a gender perspective the association with subjective health of the interaction between education and household arrangements within the framework of social determinants of health placed at the micro and mezzo levels.

论新时代医疗保险公法人治理体制的创新——基于多中心治理理论

本文基于多中心治理理论检视发现，现行的医疗保险运行机制存在基本医疗保险基金所有权与管理权分离、医疗保险政策改革只能"做加法"不能"做减法"，其他相关利益主体缺位、改革无法满足多方诉求，医保经办主体动力和能力不足等问题。这些问题不仅导致医疗保险制度的可持续性面临严峻挑战，而且与实现全民统一医疗保险制度的目标渐行渐远。因此，在新时代背景下，为了构建权责清晰、保障适度、可持续发展的医疗保险制度，本文提出创新医疗保险公法人治理体制，完善中国特色医疗保险治理体系，同时推进社会保险公法人治理机制的创新，促进政府、市场与社会之间的协同与配合，最终实现推进国家治理体系和治理能力现代化的伟大目标。