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Translation, cross-cultural adaptation, correlation with other PROMs and validation of the MF/SS-CTCL-QoL questionnaire on quality of life in mycosis fungoides (MF) and Sézary syndrome (SS)
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MM. Onteniente-Gomis1,2, SI. Palencia Perez1,2,5, FJ. Ortiz de Frutos1,2, CM. García Álvarez1,2, C. Martin Arriscado Arroba2, C. Varela Rodriguez3, PL. Ortiz-Romero1,2,4,5,
Autor para correspondencia
pablo.ortiz@salud.madrd.org

Corresponding author
1 Departmento de Dermatología, Hospital Universitario 12 de Octubre, Madrid, Spain
2 Instituto de Investigación i+12, Hospital 12 de Octubre, Madrid, Spain
3 Departamento de Calidad Asistencial del Hospital Universitario 12 de Octubre, Madrid, Spain
4 CIBERONC, Spain
5 Facultad de Medicina, Universidad Complutense, Madrid, Spain
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Abstract

Background: MF/SS-CTCL-QoL is the first specific questionnaire to measure the quality of life (QoL) of patients with Mycosis Fungoides (MF) and Sézary Syndrome (SS). It was developed by the Cutaneous Lymphoma Foundation.

Objectives: 1) Translate and cross-culturally adapt the MF/SS-CTCL-QoL to Spanish (Spain). 2) To study correlation and concordance of the MF/SS-CTCL-QoL with PROM (Patient Reported Outcome Measurements): EORTC QLQ-C30, Dermatology Life Quality Index (DLQI) and Skindex-29.

Material and methods: Using a 10-step procedure, including expert meetings and surveys of adult patients with MF or SS, a Spanish version of the MF/SS-CTCL-QoL was developed. Subsequently, its comprehensibility, completeness and relevance were evaluated. A correlation study was performed using Spearman's rho coefficient and concordance using the intraclass correlation coefficient (ICC), between MF/SS-CTCL-QoL and the EORTC QLQ-C30, DLQI and Skindex-29 questionnaires.

Results: Translation was satisfactory for professionals and patients, with minimal adaptations required. Excellent correlation (0.8499) was observed between MF/SS-CTCL-QoL and Skindex-29, good (0.7394) with DLQI and poor (0.5602) with EORTC QLQ-C30. Agreement was moderate (0.699) with DLQI, significant (0.865) with Skindex-29 and low (0.568) with EORTC QLQ-C30.

Conclusions: The Spanish version of MF/SS-CTCL-QoL represents a useful tool for the clinical management of patients with MF and SS. It is linguistically equivalent to the original, assesses the same dimensions with an adequate level of comprehensibility. There is an excellent correlation with Skindex-29, good with DLQI and poor with EORTC QLQ-C30.

Keywords:
Quality of life
Mycosis fungoides
Sézary Syndrome
Translation and adaptation
PROM
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