Health-related Quality of Life for Children With Leukemia: Child and Parental Perceptions

Abstract

Background: The importance of health-related quality of life (HRQoL) in patients with acute lymphoblastic leukemia (ALL) has increased in recent years. This study aimed to assess HRQoL in children with ALL, affecting factors, and the relationship between parent proxy-report and child self-report HRQoL. Materials and Methods: A total of 59 children and their parents (both mother and father) were enrolled in this cross-sectional study. Turkish version of the Pediatric Quality of Life Inventory (PedsQL) 3.0 Cancer Modules were used to determine HRQoL. Results: According to subscales of the self-report form, nausea and operational anxiety scores differed significantly by the treatment status; communication score varied considerably by the hospitalization length of stay; pain and hurt, cognitive problems, and perceived physical appearance scores differed significantly by the maternal chronic disease status (P<0.05). The presence of maternal chronic disease was significantly related to the total score of the parent-proxy report (mother) (P<0.05). There was a moderate correlation between total scores of child and mother (P<0.05, r=0.419) but not with the father. Conclusion: Children on-treatment had significant problems in nausea and procedural anxiety subscales; however, children who were hospitalized more had fewer issues in the communication subscale. Also, children whose mother had chronic disease had poorer HRQoL regarding pain and hurt cognitive problems and treatment anxiety. Given the importance of assessment and monitoring HRQoL in children with ALL, health professionals should be aware of how parents’ chronic disease affects HRQoL. Psychosocial support should be provided to children and their parents, especially for those whose parents have a chronic illness.

Quality of life in children and adolescents after treatment for acute lymphoblastic leukemia according to the NOPHO ALL2008 protocol

“…The reasons for this could be several. First, parents with high levels of distress or low HRQoL themselves tend to rate their child's HRQoL as low, 7,18,57–61 and parents, especially mothers, of children recently treated for cancer have been shown to have impaired HRQoL, 59,62 which is true also for this cohort 45 . Second, after a life‐altering event such as being diagnosed with a life‐threatening disease, a phenomenon referred to as response shift often occurs.…”

Repercusiones emocionales y psicosociales en pacientes oncológicos en etapa infanto-juvenil

“…Una enfermedad catastrófica como el cáncer genera repercusiones a corto, mediano o largo plazo tanto en el enfermo como en su familia. La importancia radica en el rol fundamental que cumple la salud mental como coadyuvante de la salud física y en las consecuencias emocionales, sociales y de conducta que pueden generarse tras el diagnóstico de una enfermedad con una alta morbimortalidad (4).…”

Relationships Between Parental Anxiety and Child Quality of Life in Advanced Childhood Cancer

“…Other studies have found no age effect (Rosenberg et al, 2016). Additionally, family factors, such as lower household income (Ilowite et al, 2018; Robson et al, 2021), greater family psychosocial risk (Pierce et al, 2017), maternal chronic disease (Ocak et al, 2021), family conflict (Desjardins et al, 2022), and unhealthy family functioning (Zheng et al, 2018) are also associated with lower quality of life in children with cancer.…”