International validation of a health-related quality of life questionnaire for Hodgkin Lymphoma: the EORTC QLQ-HL27

Hodgkin lymphoma (HL) has become one of the most curable cancers. Therefore, rigorous assessment of health-related quality of life (HRQoL) and symptom burden of these patients is essential to support informed clinical decisions. This paper reports the final results of an international study by the European Organisation for Research and Treatment of Cancer (EORTC) to develop a HRQoL disease-specific measure for these patients: the EORTC QLQ-HL27. Patients with a confirmed diagnosis of HL (N=381) were enrolled from 12 countries and completed the EORTC QLQ-C30, QLQ-HL27 and a debriefing questionnaire at baseline (any time after diagnosis). A subset completed a retest (N=126) or responsiveness to change analyses (RCA) second measurement (N=98). Psychometrics were evaluated. Confirmatory factor analysis showed an acceptable fit of the 27 items of the QLQ-HL27 on its four scales (symptom burden, physical condition/fatigue, emotional impact, and worries about health/functioning). Test-retest reliability, convergent validity, known-group comparisons, and RCA find satisfactory results. Symptom burden and fatigue was higher among patients on treatment (with 36-83% reporting at least a little problems) compared to those after treatment (19-61% reporting at least a little problems). Prevalence of worries about health and functioning (reporting at least a little worry) was similar for patients on treatment (51-81%) versus after treatment (52-78%). Implementation of the EORTC QLQ-HL27 in research and clinical applications will increase sensitivity of HRQoL assessment in patients with HL. High quality data generated through use of this questionnaire are expected to facilitate clinical decision making in the HL setting.