Development and initial psychometric validation of a patient-reported outcome measure for Crohn's perianal fistula: the Crohn's Anal Fistula Quality of Life (CAF-QoL) scale.
Development and initial psychometric validation of a patient-reported outcome measure for Crohn's perianal fistula: the Crohn's Anal Fistula Quality of Life (CAF-QoL) scale.
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DOI：
10.1136/gutjnl-2019-320553
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发表时间：
2021-09
期刊：
影响因子：
24.5
通讯作者：
Hart AL
中科院分区：
文献类型：
--
作者：
Adegbola SO;Dibley L;Sahnan K;Wade T;Verjee A;Sawyer R;Mannick S;McCluskey D;Bassett P;Yassin N;Warusavitarne J;Faiz O;Phillips R;Tozer PJ;Norton C;Hart AL
克罗恩病肛周瘘对患者和临床医生来说都是一个挑战。许多人对现有的治疗没有反应，尽管全球共识提出了建议，但目前还没有特定的患者生活质量工具来衡量对治疗的反应。我们针对这种复杂的疾病表型提出了一种新的经过验证的患者报告结果测量（PROM）。通过对克罗恩病肛周瘘患者生活经历的非结构化定性患者访谈、全国性多学科共识练习、对评估内科/手术/联合治疗结果的系统回顾以及患者和公众参与日，生成了一份调查问卷草稿。评估心理测量特性，包括结构效度（通过与医院焦虑和抑郁量表（HADS）和英国炎症性肠病问卷（UK-IBDQ）进行比较），并通过重测分析评估可靠性和反应性。 211 名患者的数据有助于制定最终的 28 项调查问卷。克罗恩病肛瘘生活质量 (CAF-QoL) 表现出良好的内部一致性（Cronbach’s alpha 0.88）、出色的稳定性（组内相关性 0.98）以及良好的反应性和结构效度，与 UK-IBDQ 和 HADS 呈正相关。 CAF-QoL 量表可用作研究和临床实践中的 PROM。它通过捕捉对患者的影响来补充瘘管病的客观临床评估。
Crohn’s perianal fistulas are challenging for patients and clinicians. Many do not respond to available treatments and despite recommendations by a global consensus, there are currently no specific patient-derived quality of life tools to measure response to treatment. We present a new validated patient-reported outcome measure (PROM) for this complicated disease phenotype. A draft questionnaire was generated using unstructured qualitative patient interviews on the experience of living with Crohn’s perianal fistula, a nationwide multidisciplinary consensus exercise, a systematic review of outcomes assessing medical/surgical/combined treatment and a patient and public involvement day. Psychometric properties were assessed including construct validity (by comparison with the Hospital Anxiety and Depression Scale (HADS) and the UK Inflammatory Bowel Disease Questionnaire (UK-IBDQ)), and reliability and responsiveness was assessed by test–retest analysis. Data from 211 patients contributed to development of a final 28-item questionnaire. The Crohn’s Anal Fistula Quality of Life (CAF-QoL) demonstrated good internal consistency (Cronbach’s alpha 0.88), excellent stability (intraclass correlation 0.98) and good responsiveness and construct validity, with positive correlation with the UK-IBDQ and HADS. The CAF-QoL scale is ready for use as a PROM in research and clinical practice. It complements objective clinical evaluation of fistula by capturing impact on the patient.
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