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

PROMIS-聋人概况：将聋人患者纳入残疾和结果研究

• 批准号: 9123126
• 负责人: Poorna Kushalnagar
• 金额: $ 6.86万
• 依托单位: ROCHESTER INSTITUTE OF TECHNOLOGY
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-01 至 2016-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9123126
• 关键词: 13 year old; Access to Information; Address; Adult; Advisory Committees; Affect; American; Applications Grants; Attention Concentration; Audiology; Child; Chronic; Clinical; Clinical Trials; Cochlear Implants; Communication; Communication Barriers; Communication impairment; Data; Data Collection; Data Set; Development; Disease; Dose; Ensure; Fatigue; Feeling; Funding; Future; Gender; Generic Drugs; Goals; Health; Health Status; Healthcare; Hearing; Hearing Aids; Hearing Impaired Persons; Home environment; Human; Individual; Intervention; Knowledge; Language; Lead; Left; Lesbian Gay Bisexual Transgender; Life; Linear Regressions; Linguistics; Literature; Logistic Regressions; Measurement; Measures; Mental Fatigue; Mental Health; Methodology; Methods; Modeling; National Institute on Deafness and Other Communication Disorders; Occupations; Outcome; Outcome Measure; Outcomes Research; Patient Outcomes Assessments; Patients; Perceived quality of life; Population; Prevalence; Prevention; Provider; Psyche structure; Psychometrics; Public Health; Quality of life; Randomized; Recording of previous events; Regression Analysis; Reporting; Research; Research Personnel; Risk; Risk Factors; Sampling; Schools; Services; Sign Language; Strategic Planning; Stress; Sum; Surveys; System; Technology; Testing; Time; Translating; Translations; United States National Center for Health Statistics; United States National Institutes of Health; Work; Workplace; career; deafness; design; disability; exhaustion; experience; health disparity; hearing impairment; improved; innovation; insight; physical conditioning; public health relevance; response; social; social communication; stressor; success

 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.

 描述（由适用提供）：当前的患者报告的结果指标严重取决于英语，这对使用美国手语（ASL）的聋哑人（DHH）患者呈现出严重的语言障碍（DHH）。在ASL和英语中，对患者报告的结果指标的可用性对于可访问的技术和服务的用户有效，将为改善预防和治疗模型提供重要的见解，从而导致服务不足的DHH人群中更好的个人和公共健康。该研究计划基于库沙纳加尔博士先前关于死亡和听力（DHH）人口的沟通和生活质量成果的研究。与沟通相关的疲劳与医疗保健结果有关。具体目的包括（1）描述语言和 Promis聋哑概况的内部有效性，（2）检查DHH子组之间的QOL域，以及（3）在全国范围内遭受聋哑成年人样本中评估健康状况和通用QOL的通信压力和风险因素的普遍性。 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 measurement), a psychometric with experience in conducting IRT and psychometric analyses for patient reported outcome measures, an audiologist with expert in (re)habilitative audiology and hearing related outcomes, an ASL翻译专家和生物统计学家。咨询委员会由与该项目有关的主题专家组成，并以与DHH人口合作而闻名的全国性。这项研究的结果将更好地理解可能导致听力损失的人经常观察到的生活质量差的机制。本应用的目标与NIDCD 2012 - 2016年的策略一致，与改善人类交流和降低健康差异的结果相关，预期的发现将支持为一项随机研究的未来赠款提案的制定，该提案将评估诺言聋人概况可检测到最小重要变化与干预措施的最小重要变化的能力。