Empowerment: developing a robust instrument to measure patient benefits from clinical genetics services

赋权：开发强大的工具来衡量患者从临床遗传学服务中获益

• 批准号: G0601696/1
• 负责人: Marion McAllister
• 金额: $ 35.76万
• 依托单位: University of Manchester
• 依托单位国家: 英国
• 项目类别: Fellowship
• 财政年份: 2007
• 资助国家: 英国
• 起止时间: 2007 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=G0601696%2F1
• 关键词: Empowerment; developing; robust; instrument; measure

This project aims to develop a new measure of outcome (empowerment) for clinical genetics services. This patient questionnaire could make it possible to evaluate different ways of providing those services, to ensure services are developed to meet patient needs. Genetic healthcare covers a complex range of services, including disease diagnosis, genetic testing, supportive counselling, and information provision. Patients come from families affected with a range of different genetic conditions, of varying severity and with diverse effects on health. Some patients are themselves healthy and come to seek information and counselling about their risk of developing or passing on a condition. Because there are often no medicines or operations to offer, it has been difficult to find ways to measure the patient benefits, and services have developed without good research evidence. This project builds on previous research, which identified empowerment as the primary patient benefit and will be conducted by a research genetic counsellor. This work will (1) Develop the concept of empowerment using interviews with patients, clinicians and service commissioners and (2) Develop a robust instrument to measure empowerment. This will involve asking patients to complete drafts of an empowerment questionnaire, and testing the questionnaire in technical ways to ensure robustness.

该项目旨在为临床遗传学服务开发一种新的结果（授权）衡量标准。这一病人调查表可以评估提供这些服务的不同方式，以确保服务的发展满足病人的需求。遗传保健涵盖一系列复杂的服务，包括疾病诊断、基因检测、支持性咨询和信息提供。患者来自受一系列不同遗传疾病影响的家庭，这些疾病的严重程度不同，对健康的影响也不同。有些病人本身是健康的，他们来寻求有关他们发展或传播疾病风险的信息和咨询。由于往往没有药物或手术可供提供，因此很难找到衡量患者利益的方法，而且服务的发展没有良好的研究证据。该项目建立在以前的研究基础上，该研究将赋权确定为患者的主要利益，并将由研究遗传顾问进行。这项工作将（1）通过与患者、临床医生和服务专员的访谈，制定赋权的概念;（2）开发一种强大的工具来衡量赋权。这将涉及要求患者完成授权问卷的草稿，并以技术方式测试问卷，以确保稳健性。