Using Qualitative Research to Inform the Development of a Comprehensive Outcomes Assessment for Asthma.
Using Qualitative Research to Inform the Development of a Comprehensive Outcomes Assessment for Asthma.
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DOI：
10.2165/11313840-000000000-00000
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发表时间：
2009-12-01
期刊：
影响因子：
--
通讯作者：
Bransfield CP
中科院分区：
文献类型：
--
作者：
Turner-Bowker DM;Saris-Baglama RN;Derosa MA;Paulsen CA;Bransfield CP
定性研究可以通过定义测量结构、识别测量的潜在局限性和反应误差来源以及评估可用性，为哮喘患者报告结果（PRO）测量和用户友好技术的开发提供信息。当前研究的目标是根据患者和临床专家的意见，为全面的哮喘 PRO 评估的制定提供信息。从新英格兰地区研究小组招募的 3,000 名成员中进行自我报告的成年哮喘患者参加了三个焦点小组 (N=21) 或个人认知项目汇报访谈 (N=20) 之一，以讨论哮喘如何影响他们的健康相关生活质量 (HRQOL)，并就一组初步的哮喘影响调查项目和原型患者报告提供反馈。焦点小组和认知访谈是使用传统研究原则（例如半结构化访谈指南、探究和有声思考技术）进行的。由哮喘临床专家和测量专业人员组成的专家咨询小组（N=12）被召集起来，审查焦点小组和认知访谈研究的结果，并为最终调查和报告的制定提出建议。受哮喘影响的健康领域包括身体（娱乐、玩耍、竞技运动和锻炼）、社交（活动、家庭关系）、情绪（愤怒、不安、沮丧、焦虑、担忧）、睡眠、角色（娱乐/休闲活动、工作）和性功能。影响调查中的大多数项目都很容易理解，涵盖了重要内容，并包括相关的回答选项。具有相互矛盾的例子和多个概念的项目很难理解。有人建议扩大调查内容，纳入有关身体和性功能、睡眠、自我意识、耻辱和财务的附加项目。报告被认为是有用的，参与者认为与医生分享结果很有价值。分数的图形表示并不总是能够被理解；参与者更喜欢以表格形式显示分数水平以及相关的解释性文本。在一个页面上显示不同指标的倒数分数（分数越高，在一个范围内健康状况越好，在另一个范围内健康状况越差）令人困惑。该报告的评分历史部分被认为有助于监测一段时间内的进展，特别是对于那些最近被诊断患有哮喘的人。专家小组成员一致认为，在一份总结报告中显示倒数分数可能会让患者和提供者感到困惑。他们还强调了为患者提供全面解释指南的重要性，重点是他们下一步应该根据分数做什么。小组成员对提供者和总体级别的报告提出了建议（例如，“危险信号”表示显着的分数变化或显着性的分界点；识别得分较低或最近变得更糟的子组）。在产品开发的早期阶段纳入患者、临床医生和测量专家的意见，应该可以提高该 PRO 测量的结构有效性，并增强其在医疗保健中的实际应用。
Qualitative research can inform the development of asthma patient-reported outcome (PRO) measures and user-friendly technologies through defining measurement constructs, identifying potential limitations in measurement and sources of response error, and evaluating usability. The goal of the current study was to inform the development of a comprehensive asthma PRO assessment with input from patients and clinical experts. Self-reported adult asthma sufferers recruited from a 3,000 member New England-area research panel participated in either one of three focus groups (N=21) or individual cognitive item debriefing interviews (N=20) to discuss how asthma impacts their health-related quality of life (HRQOL), and provide feedback on a preliminary set of asthma impact survey items and prototype patient report. Focus groups and cognitive interviews were conducted using traditional research principles (e.g., semi-structured interview guide, probing, and think aloud techniques). An Expert Advisory Panel (N=12) including asthma clinical specialists and measurement professionals was convened to review results from the focus group and cognitive interview studies and make recommendations for final survey and report development. Domains of health impacted by asthma included physical (recreation, play, competitive sports, and exercise), social (activities, family relationships), emotional (anger, upset, frustration, anxiety, worry), sleep, role (recreational/leisure activities; work), and sexual functioning. Most items in the impact survey were easily understood, covered important content, and included relevant response options. Items with contradictory examples and multiple concepts were difficult to comprehend. Suggestions were made to expand survey content by including additional items on physical and sexual functioning, sleep, self-consciousness, stigma, and finances. Reports were considered useful and participants saw value in sharing the results with their doctor. Graphic presentation of scores was not always understood; participants preferred tabular presentation of score levels with associated interpretative text. Display of inverse scores for different measures (higher scores equaling better health on one scale and worse health on another) shown on a single page was confusing. The score history section of the report was seen as helpful for monitoring progress over time, particularly for those recently diagnosed with asthma. Expert panelists agreed that displaying inverse scores in a single summary report may be confusing to patients and providers. They also stressed the importance of comprehensive interpretation guidelines for patients, with an emphasis on what they should do next based on scores. Panelists made recommendations for provider and aggregate-level reports (e.g., “red flags” to indicate significant score changes or cut-points of significance; identification of subgroups that have scored poorly or recently gotten worse). Incorporating input from patients, clinicians, and measurement experts in the early stages of product development should improve the construct validity of this PRO measure and enhance its practical application in healthcare.
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