PROMIS-Deaf Profile: Inclusion of Deaf Patients in Disability and Outcomes Research

 描述(由申请人提供)：目前患者报告的结果测量严重依赖英语，这给使用美国手语(ASL)的聋重听(DHH)患者带来了严重的语言障碍。以ASL和英语提供对可获得技术和服务的用户有效的患者报告结果衡量标准，将为改进预防和治疗模式提供重要的见解，从而在服务不足的DHH人群中改善个人和公共健康。该研究计划建立在Kushalnagar博士之前对聋人和重听(DHH)人群的沟通和生活质量结果的研究基础上。与沟通相关的疲劳与医疗保健结果相关。具体目标包括(1)描述语言和 (2)检查DHH亚组之间的QOL领域，以及(3)在全国范围内的早聋成人样本中评估沟通压力和影响健康状况和一般QOL的风险因素的流行率。这项研究将由一个研究团队进行，其中包括：一名在DHH人群中拥有生活质量结果专业知识的职业早期调查员，一名在患者报告结果测量方面具有专业知识的高级调查员(Facit疲劳QOL测量工具的创建者)，一名具有对患者报告结果测量进行IRT和心理测量分析经验的心理测量师，一名具有(康复)康复听力学和听力相关结果专业知识的听力学专家，一名ASL翻译专家，以及一名生物统计学家。咨询委员会由与该项目有关的专题方面的专家组成，他们在DHH人口方面的工作全国闻名。这项研究的结果将提供一个更好的理解机制，这些机制可能导致听力损失患者经常观察到的低生活质量。这项申请的目标与NIDCD 2012-2016年有关改善人类交流结果和减少健康差距的战略一致，预期的研究结果将支持未来随机研究拨款提案的发展，该研究将评估普鲁米斯-聋人特征通过干预检测最小重要变化的能力。

 DESCRIPTION (provided by applicant): Current patient-reported outcome measures are heavily dependent on English, which present serious language barriers to deaf and hard of hearing (DHH) patients who use American Sign Language (ASL). The availability of patient-reported outcome measures in ASL and English and such that is valid for users of accessible technology and services will provide important insights on improving prevention and treatment models that will lead to better personal and public health within the underserved DHH population. The research plan builds on Dr. Kushalnagar's prior research on communication and quality of life outcomes with deaf and hard of hearing (DHH) population. Communication-related fatigue is relevant to healthcare outcomes. Specific aims include (1) describing the linguistic and internal validity of PROMIS-Deaf profile, (2) examining QoL domains across DHH sub-groups, and (3) evaluating the prevalence of communicative stress and risk factors for health status and generic QoL in a nationwide sample of early-deafened adults. The study will be conducted by a research team that includes: an early career investigator with expertise in quality of life outcomes in DHH population, a senior investigator with expertise in patient reported outcome measures (the creator of the FACIT fatigue QoL measure), a psychometrician with experience in conducting IRT and psychometric analyses for patient reported outcome measures, an audiologist with expertise in (re)habilitative audiology and hearing related outcomes, an ASL translation expert, and a biostatistician. The Advisory Committee consists of experts on the subject matter related to the project and who are nationally known for their work with DHH population. Results from this study will provide a better understanding of the mechanisms that may contribute to poor quality of life frequently observed for individuals with hearing loss. The goals of this application are consistent with the NIDCD 2012-2016 strategies related to improving outcomes for human communication and reducing health disparities, and expected findings will support the development of a future grant proposal for a randomized study that will assess the ability of PROMIS- Deaf profile to detect minimally important changes with intervention.