ATTR淀粉样变患者症状调查的内容验证:来自患者和临床医生认知汇报访谈的结果。

IF 1.8 Q3 HEALTH CARE SCIENCES & SERVICES Patient Related Outcome Measures Pub Date : 2020-08-26 eCollection Date: 2020-01-01 DOI:10.2147/PROM.S264034
Avery A Rizio, Lynne E Broderick, Michelle K White, Tiffany P Quock
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引用次数: 1

摘要

目的:淀粉样转甲状腺素(ATTR)淀粉样变性是一种罕见的、进行性的、致命的疾病。ATTR患者症状调查(ATTR- pss)以前是通过文献综述和临床医生和患者的概念启发输入开发的,并在患者焦点小组评估后进行修订。本研究通过对临床医生和患者的定性认知述职访谈,进一步评估了atr - pss的内容效度。方法:对7名临床医生和10名ATTR淀粉样变患者进行单独访谈,评估他们的总体印象、调查的清晰度和适当性、测量概念的相关性、项目和反应选择集的全面性和可理解性。结果:临床医生承认atr - pss在研究和临床环境中的有用性。他们建议对调查说明进行轻微修改,增加3种症状,并将10种症状从症状列表转移到2个单独的项目。患者发现atr - pss易于完成且与他们的经历相关。他们的反馈导致了对指导文本的修改,对4种症状的描述进行了编辑,删除了1种症状,并增加了2种诊断。结论:研究结果支持atr - pss作为野生型和遗传性ATTR淀粉样变患者症状频率、严重程度和影响的适当测量的内容有效性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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Content Validation of the ATTR Amyloidosis Patient Symptom Survey: Findings from Patient and Clinician Cognitive Debriefing Interviews.

Purpose: Amyloid transthyretin (ATTR) amyloidosis is a rare, progressive, and fatal disease. The ATTR Patient Symptom Survey (ATTR-PSS) was previously developed through literature review and concept elicitation input from clinicians and patients and revised after evaluation by a patient focus group. This study further evaluated the content validity of the ATTR-PSS through qualitative cognitive debriefing interviews with clinicians and patients.

Methods: Seven clinicians and 10 patients with ATTR amyloidosis were interviewed individually regarding their overall impressions, the clarity and appropriateness of the survey, relevance of concepts measured, and comprehensiveness and comprehensibility of items and response choice sets.

Results: Clinicians acknowledged the usefulness of the ATTR-PSS in research and clinical settings. They suggested minor modifications to the survey instructions, the addition of 3 symptoms, and the transfer of 10 conditions from the symptom list to 2 separate items. Patients found the ATTR-PSS to be easy to complete and relevant to their experiences. Their feedback resulted in modification to instruction text, edits to the description of 4 symptoms, removal of 1 symptom, and addition of 2 diagnoses.

Conclusion: The findings support the content validity of the ATTR-PSS as an appropriate measure of symptom frequency, severity, and impact in patients with wild-type and hereditary ATTR amyloidosis.

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来源期刊
Patient Related Outcome Measures
Patient Related Outcome Measures HEALTH CARE SCIENCES & SERVICES-
自引率
4.80%
发文量
27
审稿时长
16 weeks
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