Health-related Quality of Life (HRQL) in ALL-patients Treated with Chemotherapy only - A Report from the Late Effects Surveillance System in Germany

Background: The study examines the HRQL in children suffering from ALL over time. Patients: 96 patients (average age 7.1 years) were included, treated with chemotherapy in 15 German study centres between 1997 and 2003. Methods: The HRQL was assessed based on both the parent report (POQOLS) and the patient self-report (KINDL) at 3 intervals: up to 2 weeks after diagnosis (T1), upon completion of the re-induction therapy (T2) and at the end of the maintenance therapy (T3). To analyse the changes of HRQL over time, the differences between the individual scores (T2-T1 and T3-T1) were calculated and statistically tested. The HRQL results from KINDL were also compared to a sample from the German general population. Results: POQOLS (scale 0 (optimum) to 6): A decrease of HRQL was found in the domain "activity" at T1 (mean score=3.1) and T2 (mean score=2.6). Over time, HRQL improved significantly with a mean score-difference T3-T1 = - 0.7 (p=0.001). KINDL (scale 0 to 100 (optimum)): The individual HRQL-scores improved over time with the major increases occurring in the domains "physical" with a mean score-difference T2-T1=21.7 (p<0.0001) and a mean score-difference T3-T1=20.6 (p=0.0002) and "mental" with a mean score-difference T2-T1=7.1 (p = 0.02) and T3-T1 = 8.1 (p = 0.02). However, the mean overall HRQL-score was significantly lower compared to the general population. Conclusions: Children with ALL show lower HRQL compared to the general population. Over time, HRQL improved significantly from both the patient and the parent perspective.