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厄瓜多尔家庭报告结局量表西班牙语版(FROM - 16)的心理测量学验证及其在衡量皮肤病患者对家庭成员影响方面的应用。

Psychometric validation of the Spanish for Ecuador Family Reported Outcome Measure (FROM-16) and its application to measure impact on family members of patients with skin diseases.

作者信息

Cueva Andrea, Ali Faraz M, Johns Jeffrey, Finlay Andrew Y, Salek Sam

机构信息

Dermatology Outpatient Clinic, Hospital Carlos Andrade Marin, Quito, Ecuador.

InnovaDerm, Quito, Ecuador.

出版信息

J Patient Rep Outcomes. 2025 May 9;9(1):51. doi: 10.1186/s41687-025-00866-5.

Abstract

BACKGROUND

The Family Reported Outcome Measure (FROM-16) is a generic tool to measure the impact of health conditions on patients' family members and partners (FMs). This study aimed to translate, validate, evaluate, and implement FROM-16 in Ecuadorian Spanish and to assess the quality of life (QoL) of FMs of patients with skin diseases.

METHODS

A cross-sectional study of patients and their FMs was performed using FROM-16 and a five-point-Likert scale to evaluate patient´s skin health by the FM and physician. Construct validity, confirmatory factor analysis and item response modelling of FROM-16 were assessed.

RESULTS

195 FMs completed Ecuadorian FROM-16. Inter-item correlation was 0.40 and factor analysis confirmed the original two-factor model: Cronbach's alpha 0.89, with factor loadings of 0.44-0.76. Mean age of patients = 41.8 ± 31.1 years and of FMs = 47.3 ± 7; diseases were classified as inflammatory (n = 88) or non-inflammatory (n = 107). The mean FROM-16 score was 12.5 ± 7 meaning "a moderate effect on QoL;" however, scores of 29.2% (57 of 195) indicated a "very large" (n = 47) or "extremely large" (n = 10) effect. Populations with the highest burden were adult children main carers, not cohabiting with their sick parents (mean FROM-16 = 17 ± 7.7, n = 8, p = 0.05 versus those cohabiting), and FM of patients with inflammatory conditions (mean = 14 ± 6.9, n = 88, p = 0.006 versus those with non-inflammatory dermatoses).

CONCLUSION

The FROM-16 is a succinct, well-structured two-domain instrument. It can be used to identify the largely overlooked impact on FMs of dermatology patients. Understanding this impact may contribute to better holistic care, inform physicians' decisions, and encourage further support for families.

摘要

背景

家庭报告结局量表(FROM - 16)是一种通用工具,用于衡量健康状况对患者家庭成员及伴侣(FMs)的影响。本研究旨在将FROM - 16翻译成厄瓜多尔西班牙语版本,进行验证、评估并应用于实际,同时评估皮肤病患者家庭成员的生活质量(QoL)。

方法

采用FROM - 16和五点李克特量表对患者及其家庭成员进行横断面研究,由家庭成员和医生评估患者的皮肤健康状况。评估FROM - 16的结构效度、验证性因素分析和项目反应模型。

结果

195名家庭成员完成了厄瓜多尔语版的FROM - 16。项目间相关性为0.40,因素分析证实了原有的双因素模型:克朗巴哈系数α为0.89,因素载荷为0.44 - 0.76。患者的平均年龄为41.8±31.1岁,家庭成员的平均年龄为47.3±7岁;疾病分为炎症性(n = 88)或非炎症性(n = 107)。FROM - 16的平均得分为12.5±7,意味着“对生活质量有中等影响”;然而,29.2%(195名中的57名)的得分表明有“非常大”(n = 47)或“极其大”(n = 10)的影响。负担最重的人群是成年子女主要照顾者,他们不与患病父母同住(FROM - 16平均分为17±7.7,n = 8,与同住者相比p = 0.05),以及炎症性疾病患者的家庭成员(平均分为14±6.9,n = 88,与非炎症性皮肤病患者的家庭成员相比p = 0.006)。

结论

FROM - 16是一种简洁、结构良好的双领域工具。它可用于识别皮肤病患者对家庭成员的影响,而这一影响在很大程度上被忽视了。了解这种影响可能有助于提供更好的整体护理,为医生的决策提供依据,并鼓励为家庭提供更多支持。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/46bf/12064521/6bd58e92d647/41687_2025_866_Fig1_HTML.jpg

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