Overall Good Quality of Life Reported by Survivors of Childhood Hodgkin Lymphoma in Sweden and Finland

Aim Most children with Hodgkin lymphoma (HL) survive today, yet about 50% experience long‐term complications. This study evaluated health‐related quality of life (HRQoL) in survivors of childhood HL. Methods Two different HRQoL‐instruments, the EuroQoL 5‐Dimension 5‐Level (EQ‐5D‐5L) and Patient‐Reported Outcomes Measurement Information System (PROMIS) questionnaires, were sent to all individuals aged 0–18 and diagnosed with HL in Sweden and Finland from 2005 to 2019. Results A total of 135 of 377 survivors responded to the survey. The mean EQ‐5D‐5L index was 0.933 ± 0.11 and the EuroQoL Visual Analogue Scale (EQ‐VAS) score averaged 75.1 ± 17.6. Females reported lower scores than males on the EQ‐5D‐5L index ( p = 0.007) and EQ‐VAS ( p = 0.022), as well as more problems within the PROMIS‐domains for physical function ( p = 0.016), fatigue ( p < 0.001), anxiety ( p < 0.001), and depression ( p = 0.002). Both EQ‐5D‐5L index and PROMIS T‐scores for all assessed domains were comparable with the general population, including differences between sexes. Our analysis indicated that an EQ‐VAS cut‐off of ≤ 85 effectively identified 90%, or more, of the individuals reporting problems in the PROMIS domains for fatigue, anxiety and depression. Conclusion Survivors of childhood HL report a good HRQoL. The EQ‐VAS may serve as a useful, simple screening tool for detecting survivors in need of psychosocial interventions.