Measurement of Quality of Life in Patients with Mycosis Fungoides/Sezary Syndrome Cutaneous T-Cell Lymphoma: Development of an Electronic Instrument.

ABSTRACT:

Background

Although the quality of life (QoL) plays an important role in treatment decision making and clinical management of mycosis fungoides (MF) or Sézary syndrome (SS) subtypes of cutaneous T-cell lymphomas (MF/SS-CTCLs), an MF- or SS-specific measure of QoL does not exist.

Objective

The objective of this research was to develop and validate the first QoL instrument for MF/SS-CTCL using a patient-centered approach.

Methods

A conceptual framework for the MF/SS-CTCL QoL was developed through a literature review and interviews with key opinion leaders. Concept elicitation with patients was utilized to refine the conceptual model and generate preliminary items. The items were then revised based on qualitative and quantitative feedback obtained through cognitive debri

SUBMITTER: McCaffrey S 

PROVIDER: S-EPMC6329422 | biostudies-literature | 2019 Jan

REPOSITORIES: biostudies-literature