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Assessing health-related quality of life for advanced basal cell carcinoma and basal cell carcinoma nevus syndrome: development of the first disease-specific patient-reported outcome questionnaires.评估晚期基底细胞癌和基底细胞癌痣综合征的健康相关生活质量:首个疾病特异性患者报告结局问卷的制定。
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Aesthet Surg J. 2013 Nov 1;33(8):1099-109. doi: 10.1177/1090820X13510170. Epub 2013 Nov 15.

用于评估面部皮肤癌手术后患者报告结局的 FACE-Q 皮肤癌模块。

FACE-Q Skin Cancer Module for measuring patient-reported outcomes following facial skin cancer surgery.

机构信息

Dermatology Division, Memorial Sloan Kettering Cancer Center, 16 East 60th St, New York, NY, 10022, U.S.A.

Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.

出版信息

Br J Dermatol. 2018 Jul;179(1):88-94. doi: 10.1111/bjd.16671. Epub 2018 May 23.

DOI:10.1111/bjd.16671
PMID:29654700
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6115303/
Abstract

BACKGROUND

The patient's perspective of their facial scar after skin cancer surgery influences perception of care and quality of life (QoL). Appearance satisfaction after surgery is also an important but often overlooked treatment outcome.

OBJECTIVES

To report the psychometric validation of the FACE-Q Skin Cancer Module consisting of five scales, measuring appearance satisfaction (Satisfaction with Facial Appearance, Appraisal of Scars), QoL (Cancer Worry, Appearance-related Psychosocial Distress) and the patient experience (Satisfaction with Information: Appearance).

METHODS

Participants underwent Mohs surgery for facial basal or squamous cell carcinoma or excision of early facial melanoma. Cohort 1 received a set of scales before and after surgery. Cohort 2 received the scales on two occasions in the postoperative period for test-retest reliability. Rasch measurement theory was used to select (item-reduce) the most clinically meaningful items for the scales. Reliability, validity, floor and ceiling effects and responsiveness were also analysed.

RESULTS

Of 334 patients, 209 (response rate 62·6%) were included. Rasch analysis reduced the total scale items from 77 to 41. All items had ordered thresholds and good psychometric fit. Reliability was high (Person separation index and Cronbach's α ≥ 0·90) and scales measuring similar constructs were correlated. High floor and ceiling effects were seen for the scales. The Cancer Worry scale demonstrated responsiveness (P = 0·004).

CONCLUSIONS

The FACE-Q Skin Cancer Module meet the requirements of the Rasch model providing linearized measurement. Discriminating between patients with minimal appearance or worry impairment may be a limitation. The scales can be used for larger validation studies, clinical practice and research.

摘要

背景

患者对面部皮肤癌手术后疤痕的看法会影响他们对护理的感知和生活质量(QoL)。手术后的外观满意度也是一个重要但经常被忽视的治疗结果。

目的

报告由五个量表组成的 FACE-Q 皮肤癌模块的心理计量学验证,这些量表衡量外观满意度(面部外观满意度、疤痕评估)、生活质量(癌症担忧、与外观相关的心理困扰)和患者体验(信息满意度:外观)。

方法

参与者接受了 Mohs 手术治疗面部基底细胞或鳞状细胞癌或早期面部黑色素瘤切除术。队列 1 在手术前后接受了一套量表。队列 2 在术后两次接受量表以测试重测信度。Rasch 测量理论用于选择(项目减少)量表中最具临床意义的项目。还分析了可靠性、有效性、地板和天花板效应以及反应性。

结果

在 334 名患者中,有 209 名(应答率 62.6%)患者被纳入研究。Rasch 分析将总量表项目从 77 项减少到 41 项。所有项目都有有序的阈值和良好的心理计量学拟合。可靠性高(个体分离指数和 Cronbach's α≥0.90),且测量相似结构的量表相关。量表的地板和天花板效应较高。癌症担忧量表显示出反应性(P=0.004)。

结论

FACE-Q 皮肤癌模块符合 Rasch 模型的要求,提供线性测量。区分外观或担忧受损最小的患者可能存在局限性。这些量表可用于更大的验证研究、临床实践和研究。