Clinical Research, Rehabilitation Program, Eastern Health Authority, L.A. Miller Centre, 100 Forest Rd., St. John's, NL, Canada.
Qual Life Res. 2010 May;19(4):483-7. doi: 10.1007/s11136-010-9602-z. Epub 2010 Feb 12.
PURPOSE: The aim of this study was to reduce respondent burden and decrease data errors in patient-reported outcomes (PROs) intended for a postal survey measuring health and lifestyle factors that may affect quality of life in older people with multiple sclerosis (MS). METHODS: Participants (n = 18) were recruited from a database of outpatient visits. Using the qualitative diagnostic method, cognitive debriefing, participants completed five standardized questionnaires; Frenchay Activities Index, Barthel Index, Simple Lifestyle Indicator Questionnaire, EuroQoL EQ-5D and Personal Resources Questionnaire 2000. PRO item issues and respondent behaviors such as skipping items were recorded. Data collection was an iterative process whereby difficulties experienced by 2-3 subjects were used to modify the survey for following respondents until data saturation was reached. RESULTS: Most respondents had serious difficulties with at least one PRO item. Response errors fell into three main categories: (1) respondents did not read instructions and completed the item incorrectly, (2) respondents did not understand the question and required examples to clarify and (3) respondents felt that the pre-determined response options did not apply to them. PRO reformatting, minor modifications to item wording and addition of item examples improved precision and reduced respondent burden. CONCLUSION: Our findings support the notion that methods such as cognitive debriefing help improve precision of self-reported measures in a special population such as ours.
目的:本研究旨在减少邮寄调查中用于测量可能影响多发性硬化症(MS)老年患者生活质量的健康和生活方式因素的患者报告结局(PRO)的应答者负担和数据错误。
方法:参与者(n=18)从门诊就诊数据库中招募。使用定性诊断方法认知性访谈,参与者完成了五个标准化问卷:Frenchay 活动指数、Barthel 指数、简单生活方式指标问卷、EuroQoL EQ-5D 和个人资源问卷 2000。记录了 PRO 项目问题和应答者行为,如跳题。数据收集是一个迭代过程,通过对 2-3 名受试者遇到的困难进行修改,以适应后续受试者的调查,直到达到数据饱和。
结果:大多数应答者至少有一个 PRO 项目存在严重困难。回答错误分为三类:(1)应答者未阅读说明并错误完成项目;(2)应答者不理解问题,需要示例来澄清;(3)应答者认为预定义的应答选项不适用。PRO 重新格式化、对项目措辞进行微小修改并添加项目示例,提高了准确性并减轻了应答者负担。
结论:我们的发现支持这样一种观点,即认知性访谈等方法有助于提高我们这样的特殊人群中自我报告测量的准确性。
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