Reference values for the EORTC QLQ‐C30 in patients with advanced stage Hodgkin lymphoma and in Hodgkin lymphoma survivors

Abstract

Objectives To provide reference values for the European Organisation for Treatment and Research of Cancer (EORTC) Quality of Life Questionnaire (QLQ‐C30) in advanced‐stage Hodgkin lymphoma (HL) patients and 5‐year HL survivors. The QLQ‐C30 is the most widely used cancer‐specific questionnaire to assess Health‐Related Quality of Life (HRQoL). Methods The EORTC database was searched to identify HL RCTs in which patients’ and survivors’ HRQoL was assessed by the QLQ‐C30. HRQoL mean scores were calculated and stratified by age and gender. Minimal important differences were used to assess the clinical relevance of the findings. Data from one RCT with HRQoL scores available at baseline (n = 343) and four RCTs with HRQoL scores available at follow‐up (n = 1665) were analyzed. Results Patients reported worse HRQoL scores than survivors across most functioning scales and symptoms’ scales. These scores varied as a function of gender but not age. Survivors’ HRQoL reports were comparable to the ones of the general population. Conclusions These values provide an assessment framework for the comparison and interpretation of QLQ‐C30 scores in advanced‐stage HL. Our findings suggest that although HL patients’ HRQoL scores are worse than the general population, HRQoL scores may normalize over long‐term survival.

Long‐term outcomes in Hodgkin lymphoma survivors. Temporary trends and comparison with general population

“…The vast majority of them are very young and their very high morbidity persists despite having being cured of HL. 21 Our study has some limitations. Due to the long follow-up, the causes of death were not known in 10% of the deceased patients.…”

“…This degree of morbidity greatly affects patients' quality of life. The vast majority of them are very young and their very high morbidity persists despite having being cured of HL 21 …”