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

 描述（由申请方提供）：目前患者报告的结局指标严重依赖于英语，这对使用美国手语（ASL）的聋人和重听（DHH）患者造成了严重的语言障碍。可用ASL和英语提供患者报告的结果测量，以及对可获得技术和服务的用户有效的结果测量，将为改善预防和治疗模式提供重要的见解，这将导致在服务不足的DHH人群中改善个人和公共健康。该研究计划建立在Kushalnagar博士先前对聋人和重听人（DHH）的沟通和生活质量结果的研究基础上。沟通相关疲劳与医疗结果相关。具体目标包括（1）描述语言和 PROMIS-Deaf profile的内部效度，（2）检查DHH亚组的QoL领域，（3）评估全国范围内早期成年人样本中沟通压力和健康状况危险因素的患病率和一般QoL。该研究将由一个研究团队进行，其中包括：具有DHH人群生活质量结局专业知识的早期职业研究者，具有患者报告结局指标专业知识的高级研究者（FACIT疲劳QoL测量的创建者），一名心理测量师，具有对患者报告的结局测量进行IRT和心理测量分析的经验，一名听力学家，具有（相关）听力学和听力相关结果的专业知识，一名ASL翻译专家和一名生物统计学家。咨询委员会由项目相关主题的专家组成，这些专家因其与卫生部人口有关的工作而闻名全国。这项研究的结果将更好地了解可能导致听力损失患者生活质量低下的机制。本申请的目标与NIDCD 2012-2016年改善人类交流成果和减少健康差距相关战略一致，预期结果将支持制定未来的随机研究拨款提案，该研究将评估PROMIS-聋人概况检测干预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.