Going beyond health related quality of life - towards a broader QALY measure for use across sectors

NHS的预算有限，因此决定把钱花在昂贵的药物上意味着其他服务的可用资金减少。NICE通过提供指导来帮助NHS，指导患者是否应该根据新疗法的“物有所值”来获得新药，而不是放弃新疗法。一种新疗法的金钱价值取决于该疗法带来的人均健康收益成本。然而，有人担心，用于评估健康收益的措施（即EQ-5D）没有发现与健康无关的治疗的重要益处。与此同时，在保健、社会保健和公共卫生方面采用了不同的衡量标准，因此难以在这些部门之间进行比较，这在考虑更广泛的政府预算时很重要。我们建议开发一种新的衡量标准，包括人们认为对他们的生活质量很重要的生活方面。这包括他们的社交生活，与他们的情绪和心理健康有关的方面，以及他们对生活的其他感受，以及过去关于身体和角色功能的问题。我们与服务提供商进行了一些工作，他们已经认识到，现有的措施不允许跨部门进行比较，也不包括他们认为对服务用户重要的所有内容。下一步将是生成一长串问题，询问人们的生活质量，并要求样本（n=50）的公共和服务用户告诉我们他们对他们的看法。在此基础上，将对下一阶段的项目进行修订。然后，我们将对大约2000名全科医生、心理健康和社会护理服务使用者以及非正规护理人员进行调查，并请他们填写一长串问题（最多50个）。他们的答案将用于测试问题，以确定哪些问题最适合用于较小的最终版本。下一阶段发展出一种方法，对人们对这些问题的回答进行打分，分数从0到1，其中0表示生活质量非常糟糕，就像死了一样糟糕，到1表示最好的生活质量，所有分数都在中间。这些分数是通过要求公众成员进行一系列选择来获得的，选择是长时间过较差质量的生活，还是短时间过完整质量的生活，这种方法被称为时间权衡。这些数据将以不同的方式进行分析，以帮助估计生活质量测量的分数，并了解人们的价值观是如何根据他们是谁而变化的。我们还将采用一种不同的方法，允许与NICE合作的普通公众（即NICE公民委员会的成员）通过一种涉及更多讨论的方法为新措施提供价值。将这些值与由TTO方法生成的值进行比较，以查看值是否存在差异，并探索它们发生的位置和原因。本研究的最后一部分将研究如何应用这一措施来评估不同公共服务领域（包括卫生保健、社会保健和公共卫生）干预措施的物有所值。这将涉及根据新的生活质量衡量标准对现有的保健和社会护理措施重新打分，并使用这些重新加权的衡量标准来测试其影响，以比较现有的干预措施。在整个项目中，我们将与NICE和其他可能考虑使用新措施的决策者密切合作，并就如何将其应用于卫生、社会保健和公共卫生提供指导。我们还将与EQ-5D的提供者Euroqol集团合作，这是NICE使用的主要衡量标准，以借鉴他们的经验以及正在进行的开发和推广新标准的研究。

The NHS has a limited budget and so deciding to spend money on an expensive drug means less is available for other services. NICE helps the NHS by providing guidance on whether new medicines should be made available to patients based on the 'value for money' of the new treatment compared to what will be forgone. The value for money of a new treatment is decided by looking at the cost per gain in health from the treatment. However, there are concerns that the measure used to assess health gain (known as EQ-5D) does not pick up important benefits of the treatment that are not to do with health. At the same time, different measures are used in health care, social care and public health making it difficult to compare across these sectors, which is important when thinking about the wider government budget.We are proposing to look at developing a new measure that includes aspects of life that people think are important to their quality of life. This includes their social life, aspects related to their emotions and mental health as well as other how they feel about their lives alongside questions that have been asked in the past about physical and role functioning. We have done some work with service providers who have already identified that the existing measures do not allow for comparisons across sectors or cover all that they think is important for service users. The next step will be to generate a long list of questions asking people about their quality of life and asking a sample (n=50) of the public and service users to tell us what they think about them. On the basis of this the items will be revised for the next phase.We will then conduct a survey with around 2000 users of services in general practice, mental health and social care and informal carers and ask them to complete the long list of questions (up to 50). Their answers will be used to test out the questions to see which ones would be best to use in a smaller final version of the measure.The next stage develops a way of scoring people's answers to these questions on a scale from zero to one, where zero is for someone whose quality of life is so bad that it is as bad as being dead up to one for best imaginable quality of life, with all scores in between. These scores are obtained from asking members of the general public to undertake a series of choices between living in poorer quality of life for longer or a shorter period in the full quality of life, a method called time trade off. These data will be analysed in various ways to help estimate the scores for the quality of life measure and to understand how people's values vary on the basis of who they are. We will also use a different method that allows members of the general public who work with NICE (i.e. members of NICE Citizen's Council) to provide values for the new measure using an approach that involves more discussion. These values will be compared to those generated by the TTO method to see if there are differences in values and to explore where and why they occur.The final part of this study will look at how to apply this measure to assess value for money of interventions across different areas of public services, including health care, social care and public health. This will involve re-scoring the existing health and social care measures in terms of the new quality of life measure and testing the impact using these re-weighted measures to compare existing interventions. Throughout the project, we will be working closely with NICE and other policy makers who might consider using the new measure and providing guidance on how to apply it in health, social care and public health. We will also work with the provider of the EQ-5D, the Euroqol group, which is the main measure used by NICE, in order to draw from their experience as well as on-going studies on developing and promoting the new measure.