A systematic review of health-related quality of life in children and adolescents during treatment for cancer

Health-related quality of life (HRQL) is a multidimensional concept which captures the individual’s perception of treatment burden. Evaluating HRQL during treatment for childhood cancer provides insight into the burden of the treatment from the child’s and/or parent’s perspective. In this review, we aimed to describe Patient-Reported Outcome Measures (PROMs) used to measure HRQL during treatment, describe how HRQL of paediatric oncology patients differs from the healthy norms, and describe biopsychosocial variables that are related to HRQL during treatment. We conducted a systematic review of HRQL of childhood cancer patients on treatment, according to PRISMA guidelines. We searched PubMed, EMBASE, PsycINFO and CINAHL, and after full-text review we included 85 papers (84 studies) with 7311 participants. These studies were conducted in 30 different countries and utilised 23 different PROMs. The most commonly used PROM was Pediatric Quality of Life generic core scales. While many different PROMs were used in the included studies, none of them covered all aspects of HRQL. We identified a lack of research regarding the effects of immuno- and CAR-T therapy and coping strategies of the child and/or the parents on HRQL, as well as a knowledge gap regarding HRQL in children below 2 years of age. All studies reported lower HRQL outcomes for patients in comparison to healthy children of siblings. Overall, children on treatment compared to off treatment reported lower HRQL. Described from a biopsychosocial perspective, we found inconsistent associations between other variables and HRQL outcomes. This can be explained by different studies classifying different groups differently. To be able to compare HRQL outcomes of childhood cancer patients internationally we recommend the use of a paediatric cancer PROM core set