Development and validation of QOL-E© instrument for the assessment of health-related quality of life in myelodysplastic syndromes

Oliva, Esther N., Nobile, Francesco and Dimitrov, Borislav D. (2013) Development and validation of QOL-E© instrument for the assessment of health-related quality of life in myelodysplastic syndromes. Central European Journal of Medicine, 8 (6), 835-844. (doi:10.2478/s11536-013-0196-z).

Abstract

Objective: Supportive care and sustained health-related quality of life (HRQoL) are essential in the management of myelodysplastic syndromes (MDS), yet specific instruments for the measurement of HRQoL in MDS are lacking. We report on the development and validation of a psychometric questionnaire assessing HRQoL in MDS patients (QOL-E©).

Methods: The questionnaire was developed in three stages. First, a Medline search and interviews in focus groups generated a list of concepts important to MDS patients. Second, pilot (derivation) study was performed in a cross-sectional sample of 52 MDS patients. Third, field (validation) testing in a clinical setting investigated psychometric properties in 147 MDS patients from six cohorts.

Results: Forty-eight items were identified, and fine-tuned to a 37-item list, then a final 29-item questionnaire containing a general well-being dimension, four general health dimensions (physical, functional, social, and sexual), and disease-related dimensions (fatigue and MDS-related disturbances).

Conclusion: Cognitive debriefing and psychometric analyses demonstrated good internal validity and patient acceptability. The QOL-E© is the first HRQoL instrument developed specifically for MDS patients.

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