Abstract：
BACKGROUND: Hidradenitis suppurativa (HS), a chronic skin condition that causes pain and physical dysfunction, can impact significantly on quality of life. Disease-specific tools have been designed to assess the impact of HS on patients, including the HS Symptom Daily Diary (HSSDD), the HS Symptom Questionnaire (HSSQ), and the HS Quality of Life (HiSQOL©) questionnaire, which have been developed into electronic instruments (eHSSDD, eHSSQ, and eHiSQOL©).
OBJECTIVE: The objective of this study was to establish the content validity of the electronic version of the HSSDD and HSSQ, and the acceptability and usability of the HSSDD, HSSQ, and HiSQOL©, using concept elicitation and cognitive debriefing interviews.
METHODS: This was a non-interventional qualitative video interview study involving participants aged ≥18 years with moderate to severe HS recruited from a single clinical site in the USA. Interviews gathered feedback on participants\' symptom experience, followed by training and completion of the eHSSDD, eHSSQ, and eHiSQOL© questionnaires on electronic handheld devices. Participants were then interviewed on the content of the eHSSDD and eHSSQ and the acceptability and usability of all three instruments. Interviews were transcribed and qualitatively analysed.
RESULTS: Twenty participants with moderate to severe HS (median age: 41.5 [range: 20.0-64.0]; n = 16/20 female) were included. All participants found the eHSSDD, eHSSQ, and eHiSQOL© instructions clear and described the instruments as \"easy\", \"simple\" and \"self-explanatory\". Overall understanding of individual items within the eHSSDD and eHSSQ was high; however, 6/20 participants had difficulty in understanding the average skin pain item in the eHSSDD. All participants were able to accurately recall their symptoms within the recall periods of the eHSSDD and eHSSQ, although 4/20 participants found the 24-h recall period of the eHSSDD limiting. Completion time was quick across all instruments, and usability was high, with the majority of participants reporting no difficulty in completing questionnaires on electronic devices.
CONCLUSIONS: The concepts covered in the eHSSDD and eHSSQ are relevant and important to patients, supporting their content validity. The findings also provide evidence of acceptability and usability of the eHSSDD, eHSSQ, and eHiSQOL©. A limitation was that all participants were recruited from a single site, which may have introduced selection bias and thus limited the generalisability of results.
OBJECTIVE: The objective of this study was to establish the content validity of the electronic version of the HSSDD and HSSQ, and the acceptability and usability of the HSSDD, HSSQ, and HiSQOL©, using concept elicitation and cognitive debriefing interviews.
METHODS: This was a non-interventional qualitative video interview study involving participants aged ≥18 years with moderate to severe HS recruited from a single clinical site in the USA. Interviews gathered feedback on participants\' symptom experience, followed by training and completion of the eHSSDD, eHSSQ, and eHiSQOL© questionnaires on electronic handheld devices. Participants were then interviewed on the content of the eHSSDD and eHSSQ and the acceptability and usability of all three instruments. Interviews were transcribed and qualitatively analysed.
RESULTS: Twenty participants with moderate to severe HS (median age: 41.5 [range: 20.0-64.0]; n = 16/20 female) were included. All participants found the eHSSDD, eHSSQ, and eHiSQOL© instructions clear and described the instruments as \"easy\", \"simple\" and \"self-explanatory\". Overall understanding of individual items within the eHSSDD and eHSSQ was high; however, 6/20 participants had difficulty in understanding the average skin pain item in the eHSSDD. All participants were able to accurately recall their symptoms within the recall periods of the eHSSDD and eHSSQ, although 4/20 participants found the 24-h recall period of the eHSSDD limiting. Completion time was quick across all instruments, and usability was high, with the majority of participants reporting no difficulty in completing questionnaires on electronic devices.
CONCLUSIONS: The concepts covered in the eHSSDD and eHSSQ are relevant and important to patients, supporting their content validity. The findings also provide evidence of acceptability and usability of the eHSSDD, eHSSQ, and eHiSQOL©. A limitation was that all participants were recruited from a single site, which may have introduced selection bias and thus limited the generalisability of results.
摘要：
背景：化脓性汗腺炎（HS），导致疼痛和身体功能障碍的慢性皮肤病，会对生活质量产生重大影响。针对特定疾病的工具旨在评估HS对患者的影响，包括HS症状每日日记（HSSDD），HS症状问卷(HSSQ)和HS生活质量问卷(HiSQOL©)，已经发展成电子仪器(eHSSDD，eHSSQ和eHiSQOL©)。
目的：为了建立HSSDD和HSSQ电子版的内容效度，以及HSSDD的可接受性和可用性，HSSQ和HiSQOL©使用概念启发和认知汇报访谈。
方法：这是一项非干预性的定性视频访谈研究，涉及年龄≥18岁的中度至重度HS患者，从美国的一个临床中心招募。访谈收集了对参与者症状体验的反馈，接下来是EHSSDD的培训和完成，eHSSQ,和eHiSQOL©电子手持设备调查问卷。然后就eHSSDD和eHSSQ的内容对参与者进行了采访，以及这三种仪器的可接受性和可用性。对访谈进行转录和定性分析。
结果：纳入20名中度至重度HS患者（中位年龄：41.5[范围：20.0-64.0]；n=16/20女性）。所有参与者都找到了eHSSDD,eHSSQ和eHiSQOL©说明清楚，并将仪器描述为“简单”，\'简单\'和\'自我解释\'。对eHSSDD和eHSSQ中单个项目的总体理解很高；然而，6/20参与者难以理解eHSSDD中的“平均皮肤疼痛”项目。所有参与者都能够在eHSSDD和eHSSQ的召回期内准确地回忆起他们的症状，尽管有4/20的参与者发现eHSSDD的24小时召回期受到限制。所有仪器的完成时间很快，可用性很高，大多数参与者报告在电子设备上填写问卷没有困难。
结论：eHSSDD和eHSSQ涵盖的概念与患者相关且重要，支持其内容的有效性。这些发现还提供了eHSSDD的可接受性和可用性的证据，eHSSQ,和eHiSQOL©。一个限制是所有参与者都是从一个单一的网站招募的，这可能引入了选择偏差，从而限制了结果的普遍性。
目的：为了建立HSSDD和HSSQ电子版的内容效度，以及HSSDD的可接受性和可用性，HSSQ和HiSQOL©使用概念启发和认知汇报访谈。
方法：这是一项非干预性的定性视频访谈研究，涉及年龄≥18岁的中度至重度HS患者，从美国的一个临床中心招募。访谈收集了对参与者症状体验的反馈，接下来是EHSSDD的培训和完成，eHSSQ,和eHiSQOL©电子手持设备调查问卷。然后就eHSSDD和eHSSQ的内容对参与者进行了采访，以及这三种仪器的可接受性和可用性。对访谈进行转录和定性分析。
结果：纳入20名中度至重度HS患者（中位年龄：41.5[范围：20.0-64.0]；n=16/20女性）。所有参与者都找到了eHSSDD,eHSSQ和eHiSQOL©说明清楚，并将仪器描述为“简单”，\'简单\'和\'自我解释\'。对eHSSDD和eHSSQ中单个项目的总体理解很高；然而，6/20参与者难以理解eHSSDD中的“平均皮肤疼痛”项目。所有参与者都能够在eHSSDD和eHSSQ的召回期内准确地回忆起他们的症状，尽管有4/20的参与者发现eHSSDD的24小时召回期受到限制。所有仪器的完成时间很快，可用性很高，大多数参与者报告在电子设备上填写问卷没有困难。
结论：eHSSDD和eHSSQ涵盖的概念与患者相关且重要，支持其内容的有效性。这些发现还提供了eHSSDD的可接受性和可用性的证据，eHSSQ,和eHiSQOL©。一个限制是所有参与者都是从一个单一的网站招募的，这可能引入了选择偏差，从而限制了结果的普遍性。
