Double jeopardy and the use of QALYs in health care allocation.

The use of the Quality Adjusted Life-Year (QALY) as a measure of the benefit obtained from health care expenditure has been attacked on the ground that it gives a lower value to preserving the lives of people with a permanent disability or illness than to preserving the lives of those who are healthy and not disabled. The reason for this is that the quality of life of those with illness or disability is ranked, on the QALY scale, below that of someone without a disability or illness. Hence we can, other things being equal, gain more QALYs by saving the lives of those without a permanent disability or illness than by saving the lives of those who are disadvantaged in these ways. But to do so puts these disadvantaged people under a kind of double jeopardy. Not only do they suffer from the disability or illness, but because of it, a low priority is given to forms of health care that can preserve their lives. This, so the objection runs, is unjust or unfair. This article assesses this objection to the use of QALYs as a basis for allocating health care resources. It seeks to determine what is sound in the double jeopardy objection, and then to show that the defender of QALYs has an adequate response to it.     

Impairment, disability and handicap—old fashioned concepts?

The drawbacks of using the concepts of models in discussing the problems of disabled people are discussed. It is suggested that the terms "impairment", "disability", and "handicap" can unify the different models and enhance the position of people with disabilities in society.     

Prevention of disability on grounds of suffering

This paper examines one particular justification for the screening and termination of embryos/fetuses which possess genetic features known to cause disability. The particular case is that put forward in several places by John Harris. He argues that the obligation to prevent needless suffering justifies the prevention of the births of disabled neonates. The paper begins by rehearsing Harris's case. Then, drawing upon claims advanced in a recent paper in the Journal of Medical Ethics, it is subjected to critical scrutiny, focusing on Harris's "suffering claim" (the claim that a life with disability inevitably involves suffering on a significant scale).(1) It is argued that the suffering claim must be false if understood as an empirical claim. And, even if understood as a conceptual truth, it mistakenly assimilates the concepts of harm and suffering. Finally, again focusing on Harris's recent work in this area, his characterisation of disability as a "harmed condition" is shown not to apply in the case of at least some moderate forms of intellectual disability.     

Impact of UNCRPD on the status of persons with disabilities

The sanctity of human life is a fundamental human value and the medical profession has been ethically charged with respecting and enhancing the value of all human beings' lives. However, disability-selective abortion has been perceived as an acceptable health intervention to eliminate disabilities, and is provided for in law as well as in policies and healthcare programmes related to disability. Advanced medical technologies are being utilised not to maximise the lives of persons with disabilities but to prevent the birth of disabled people by medically terminating foetuses diagnosed with disability. Evidently, disability is seen as undesirable per se by society, and life with disability as not worth living. The disability rights perspective argues that such laws, policies and programmes deny persons with disabilities the right to life and thereby discriminate against them. They violate the United Nations Convention on the Rights of Persons with Disabilities that recognises the inherent human dignity of all human beings and treats persons with disabilities on an equal basis with all other human beings. This paper examines the question of whether disability-selective abortion as a prevention strategy diminishes the value of persons with disabilities, in the context of the right to life and dignity of life accorded by the UNCRPD to persons with disabilities. This is discussed in the context of a selected summary of international and Indian policy and law on this subject.     

Undergraduate physiotherapy education in Malawi - The views of students on disability

Background

The College of Medicine in Malawi offers an undergraduate physiotherapy programme which started in 2010. The programme aims at training competent physiotherapists who can address the needs of people with disabilities. Therefore it is important to ensure that the perceptions of physiotherapy students towards disability are appropriate.

Objectives

The study explored the views of the first cohort of physiotherapy students (n=19) in the pre-medical class in the College of Medicine, University of Malawi, on disability.

Methods

An audit of the views of premedical physiotherapy students was carried out in 2010 using the Q methodology.

Results

Two independent factors emerged which captured the views of 19 students on disability. Most of the views expressed suggest that the students empathised with people with disabilities. Participants perceived that people with disabilities can have a good quality of life like everyone else, and are as intelligent as people without disabilities. However, some participants also expressed some discomfort when around people with disabilities.

Conclusion

While there was consensus on some positive views, the negative viewpoints have the potential to act as a barrier to the rehabilitation of people with disabilities. The curriculum should ensure that the positive views are reinforced throughout the training programme, while the negative viewpoints are reversed.     

视力残疾鉴定状况分析

目的观察残疾鉴定中视力残疾的基本情况。方法对564例被鉴定人进行残情询问,视力体检,裂隙灯显微镜检查和眼底检查,并根据“中国残疾人实用评定标准”进行鉴定。结果确定一级盲133例（23．58％）,二级盲47例（8．33％）,一级低视力48例（8．51％）,二级低视力216例（38．30％）,不合格的120例（21．28％）。结论视力残疾是一个不可忽视的群体,全社会应更加关注视力残疾人,以促进和谐社会的构建与进步。     

家庭医生团队成员和残疾人对残疾人签约服务效果评价的质性研究

背景　残疾人是家庭医生签约服务优先覆盖的人群,如何为残疾人群提供符合其需求的家庭医生签约服务,提高残疾人的获得感及满意度,家庭医生团队的人员如何有针对性地为残疾人服务,以达到双方共赢的服务效果有待进一步研究。目的　了解残疾人家庭医生服务团队为签约残疾人服务过程中发现的问题并提出改进办法和建议,为社区家庭医生服务团队管理和服务签约残疾人提供依据。方法　2018年10月-2019年9月,采用半结构式访谈法,在首都医科大学附属复兴医院月坛社区卫生服务中心,设立6个焦点小组,其中3个由25名残疾人家庭医生服务团队成员组成,另外3个由21名签约的5类不同残疾人组成。以4种障碍（身体、态度、专业和系统障碍）为理论框架,结合《残疾人家庭医生签约服务指导手册》（《手册》）中残疾人接受服务的内容分别进行了深度访谈。进行实地笔记、录音和转录,编码提炼主题。结果　家庭医生团队成员都对《手册》的内容和实用性给予了肯定,同时签约家庭医生服务团队成员和残疾患者针对目前的家庭医生签约服务提出不同的需求和建议。经过比对分析,家庭医生团队方面共析出3个主题：诊疗时间长,包括残疾的身体,沟通和认知;对医生、护理进行残疾相关知识的培训,包括特定的学习需求;残疾人的服务部分超出初级保健范畴,需要再次培训学习。残疾患者方面共析出残疾人在与医疗保健系统的交互过程中存在身体、态度、专业和系统四种障碍4个主题。结论　制定完善合理的签约服务内容手册有较好的实用性,为残疾人基层医疗实践提供了工作方法,揭示了签约服务内容手册在指导特殊人群的基层卫生保健过程中的常见问题和解决办法。     

When choosing the traits of children is hurtful to others

Some commentators object to the use of embryonic and fetal diagnostic technologies by parents who wish to avoid disabilities in their children. In particular, they say this use is hurtful in the meaning it expresses, namely that the lives of people with disabilities are not valuable or are less valuable than the lives of others. Other commentators have tried to show that this meaning does not necessarily belong to parents' choices and is not therefore credible as a general moral objection. However, this analysis overlooks the way in which the use of these technologies can be legitimately interpreted as hurtful. Once we admit to these hurtful effects felt by people with disabilities and those who hold them dear, it becomes important to ask whether that hurt can justify limits on parents' choices. Because the use of these technologies does not hurt people with disabilities directly and because there is no requirement that people having children work to ensure the continued existence of people with disabilities, no justification for limiting parents' choices is to be found in the hurt some people experience in steps taken to avoid disabilities in children.     

Sampling survey of disability in 0-6 year-old children in China

INTRODUCTION Disability is an unavoidable social burden in the course of human development. Chinese government always cares about the disabled persons, and has made a series of laws and regulations for preventing disability and improving the quality of life of the disabled people, and brought the work for the handicapped into national economic and social development plan. With the national economic and social development, a great change in the situation of the handicapped, especially the d…     

Human cloning and child welfare

In this paper we discuss an objection to human cloning which appeals to the welfare of the child. This objection varies according to the sort of harm it is expected the clone will suffer. The three formulations of it that we will consider are: 1. Clones will be harmed by the fearful or prejudicial attitudes people may have about or towards them (H1); 2. Clones will be harmed by the demands and expectations of parents or genotype donors (H2); 3. Clones will be harmed by their own awareness of their origins, for example the knowledge that the genetic donor is a stranger (H3). We will show why these three versions of the child welfare objection do not necessarily supply compelling reasons to ban human reproductive cloning. The claim that we will develop and defend in the course of our discussion is that even if it is the case that a cloned child will suffer harms of the type H1-H3, it is none the less permissible to conceive by cloning so long as these cloning-induced welfare deficits are not such as to blight the existence of the resultant child, whoever this may be.     

社区残疾人药学服务需求现状及差异性研究

背景 残疾人群是多种疾病的高发人群,目前对于其医疗服务需求的研究多集中在定期体检、上门服务、康复指导等方面,而针对其药学服务需求的研究相对较少。目的 了解社区残疾人的药学服务需求,基于基本人口学特征、社会经济地位、残疾类别和残疾等级探讨其药学服务差异。方法 于2017年11—12月,采用单纯随机抽样法在上海市某街道的在册残疾人中抽取230例进行问卷调查。主要内容包括：残疾人的基本人口学特征（性别、年龄、婚姻状况）、社会经济地位（文化程度、工作状态、家庭人均月收入）、残疾类别与残疾等级、药学服务需求（需求内容、需求来源、需求程度）。结果 共回收有效问卷226份（98.3%）。残疾人的药学服务需求内容排在前2位的为“用法用量及疗程”（73.0%,165/226）、“适应证和禁忌证”（51.3%,116/226）;需求来源主要为医生（85.4%,193/226）;需求程度为非常/比较需要者占48.2%（109/226）。在需求内容上,不同工作状态者对“药品说明书解读”服务的需求率比较,差异有统计学意义（P<0.05）;不同家庭人均月收入者对“用法用量及疗程”服务的需求率比较,差异有统计学意义（P<0.05）。在需求来源上,不同年龄、工作状态、残疾等级者对由医生提供药学服务的需求率比较,差异有统计学意义（P<0.05）;不同年龄者对通过媒体获得药学服务的需求率比较,差异有统计学意义（P<0.05）。在需求程度上,不同文化程度、工作状态、残疾类别、残疾等级者对药学服务的需求程度比较,差异有统计学意义（P<0.05）。结论 不同情况残疾人的药学服务需求内容差异性不大,但需求来源、需求程度差异性较大,尤其是需求程度。社区药师应采用多种形式对残疾人开展用药宣教和个性化药学服务。     

Towards a method for informing the planning of community-based rehabilitation in Papua New Guinea

Disability is a major public health problem, particularly in developing countries, where there is a close link between poverty and disability. The complex nature of disability allows it to be addressed from a number of different perspectives. Community-based rehabilitation (CBR) is a holistic approach towards disability which is currently being supported in many parts of the world, including Papua New Guinea (PNG). Unfortunately CBR is frequently implemented in resource-poor contexts, which limits the scope for research. As a result little effort is put into determining a need before CBR programs are established, or into evaluating CBR programs following implementation. This research in the Middle Ramu, Madang Province, tested a method for acquiring information for the purposes of CBR planning in PNG. The method used an adapted form of the Ten Questions Screen for Childhood Disability. Quantitative and qualitative methods were further utilized to determine the types of disability presenting, the biomedical and perceived causes of the various disabilities, help-seeking behaviours, the disabled individual's participation in village activities, and the needs of both disabled individuals and their caregivers. A total of 158 disabled individuals were identified in a population of 4946 people and 20 in-depth interviews were conducted. The data obtained were analyzed to formulate an appropriate 'CBR package' that would cater for the specific needs of this population in the Middle Ramu. Evaluation of the basic survey method revealed that it was more sensitive than other methods previously tried in PNG, with an overall disability prevalence of 3.2% obtained. Qualitative methods allowed the fieldworkers to get a much deeper insight into the feelings and perceptions of disabled individuals. The methods tested for this research in the Middle Ramu could have application for CBR workers in other parts of PNG.     

Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in "vulnerable" groups

BACKGROUND: Debates over legalisation of physician-assisted suicide (PAS) or euthanasia often warn of a "slippery slope", predicting abuse of people in vulnerable groups. To assess this concern, the authors examined data from Oregon and the Netherlands, the two principal jurisdictions in which physician-assisted dying is legal and data have been collected over a substantial period. METHODS: The data from Oregon (where PAS, now called death under the Oregon Death with Dignity Act, is legal) comprised all annual and cumulative Department of Human Services reports 1998-2006 and three independent studies; the data from the Netherlands (where both PAS and euthanasia are now legal) comprised all four government-commissioned nationwide studies of end-of-life decision making (1990, 1995, 2001 and 2005) and specialised studies. Evidence of any disproportionate impact on 10 groups of potentially vulnerable patients was sought. RESULTS: Rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured (inapplicable in the Netherlands, where all are insured), people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk was people with AIDS. While extralegal cases were not the focus of this study, none have been uncovered in Oregon; among extralegal cases in the Netherlands, there was no evidence of higher rates in vulnerable groups. CONCLUSIONS: Where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups. Those who received physician-assisted dying in the jurisdictions studied appeared to enjoy comparative social, economic, educational, professional and other privileges.     

Is there a 'new ethics of abortion'?

This paper argues that the central issue in the abortion debate has not changed since 1967 when the English parliament enacted the Abortion Act. That central issue concerns the moral status of the human fetus. The debate here is not, it is argued, primarily a moral debate, but rather a metaphysical debate and/or a theological debate--though one with massive moral implications. It concerns the nature and attributes that an entity requires to have "full moral standing" or "moral inviolability" including a "right to life". It concerns the question when, in its development from newly fertilised ovum to unequivocally mature, autonomous morally inviolable person does a human being acquire that nature and those attributes, and thus a "right to life". The paper briefly reviews standard answers to these questions, outlining some problems associated with each. Finally there is a brief discussion of one way in which the abortion debate has changed since 1967--notably in the increasingly vociferous claim, especially from disability rights sectors, that abortion on grounds of fetal abnormality implies contempt for and rejection of disabled people--a claim that is rebutted.     

The Perruche judgment and the "right not to be born"

The French government has given in to public pressure and overturned a controversial legal ruling which recognised the right of a disabled child to seek damages. Most notably, the ruling, widely described as establishing a child's right "not to be born", had provoked "outrage" amongst groups defending the rights of the disabled and led to a ban on prenatal scans by French gynaecologists. Once again, only parents will be able to seek damages but some people think the ruling has been misinterpreted.     

Debating disability

This paper responds to the reviews by Edwards, Holm, Koch, Thomas and Vehmas of Disability Rights and Wrongs (2006). After summarising the recent history of disability studies as a discipline, it explores: the political nature of disability research, questions of ontology and definition, and the uses and abuses of the expressivist argument. Disability is an emerging field of enquiry and constructive debate is to be welcomed.     

Situation of low vision and blindness in China and their prevention

Many ocular diseases can cause the visual system damages and functional loss, which lead to blindness and low vision.That will not only affect patients' daily life and working abilities, but also have an adverse consequence to the society and economy development.Nowadays, the visual impairment has already become a public health problem worldwide.The World Health Organization (WHO) estimated that there were approximately 161 million visually impaired people all over the world, and among them 37 million were blind.Over 90% blind people lived in developing countries.1 China has a large population, and the blind and low vision problem can not be ignored.In 2006, China national survey on disability showed that there were 12330000 visually disabled people in China, which accounted for 14.86% of overall disabilities.2Understanding the prevalence and main causes of blindness and low vision and looking for effective treatment methods is essential for the prevention of visual impairment.     

鄂州市0～6岁残疾儿童疾病谱3年调查分析

目的：探讨0—6岁残疾儿童疾病谱及特点,完成特殊人群分布信息。方法：对2011年5月～2013年5月鄂州市所有0～6岁残疾儿童进行大面积摸底调查,然后筛查,再由儿科专家进行评估鉴定,汇总信息。结果：筛查出0～6岁残疾儿童262例,疾病前3位的是脑瘫、肢残、智力障碍。结论：儿童残疾是一项全球日益受关注的健康问题,残疾儿童直接影响一个家庭的幸福。残疾儿童越早得到甑别,越早得到及时治疗和康复,其康复的效果就越好,不但可以预防并发症和继发症的发生,还可以减轻残疾严重程度。     

Does injury claim status and benefit status predict low back pain outcomes?

Background

In New Zealand the Accident Compensation Corporation (ACC) is a state-funded insurance agency that accepts claims for accidental injuries, including lumbar spine injuries. It is unknown whether ACC claim status (accepted, not accepted) affects low back pain (LBP) outcomes, or whether benefit status (e.g., sickness, disability) further affects outcomes in patients without ACC cover

Aims

This study aimed to determine whether ACC claim and benefit status are likely to influence a range of outcomes for people with LBP in New Zealand.

Methods

A prospective survey of low back pain patients was performed (April 2008–October 2010). ACC claim status was recorded, and individuals without accepted claims indicated benefit status. Surveys were sent at multiple time points; pain, functional limitation, psychological factors, and general health were assessed. Statistical analysis was undertaken using ANCOVA and ANOVA (p<0.05).

Results

In total, 168 patients completed the study. Six-month measures showed individuals with no ACC claim for LBP to overall have poorer outcomes (mental health, p=0.039; pain, p=0.045; functional limitation, p=0.049); sub-group analysis (no ACC claim) between those with or without a benefit showed those on benefits to have significantly higher functional limitation (p<0.001), poorer physical health (p=0.002), greater pain (p=0.027), and stronger fear avoidance behaviours for both work (p=0.047) and physical activity (p=0.35).

Conclusion

Findings indicate individuals with accepted ACC claims for LBP have significantly better outcomes than those without, and patients on benefits with no accepted ACC claim for LBP have even poorer outcomes.     

Disability prevention and medical rehabilitation (DPMR)--prevention of disability and timely referral in leprosy

The stigma and discrimination due to disabilities in leprosy has a profound effect on a leprosy individual and the disability hampers his/her earning capacity and therefore socio-economic status. The Government of India has recently come out with an approved plan for disability prevention and medical rehabilitation. There are some objectives to provide appropriate services to the disabled or to prevent the disability. In order to prevent disability early treatment is necessary but there are a lot of studies on delayed presentation. It is in fact suggested that not only early correct treatment of leprosy with MDT but also early correct treatment of reactions and nuritis can prevent disability. Some cases as specified in the text require referral to prevent the menace. Many deformities can be corrected by reconstructive surgery. The management protocol to prevent primary impairment is depicted in Figs within the article.