Medulloblastoma has a global impact on health related quality of life: Findings from an international cohort

Abstract

Background: Understanding the global impact of medulloblastoma on health related quality of life (HRQL) is critical to characterizing the broad impact of this disease 448 | and realizing the benefits of modern treatments. We evaluated HRQL in an international cohort of pediatric medulloblastoma patients. Methods: Seventy-six patients were selected from 10 sites across North America, Europe, and Asia, who participated in the Medulloblastoma Advanced Genomics International Consortium (MAGIC). The Health Utilities Index (HUI) was administered to patients and/or parents at each site. Responses were used to determine overall HRQL and attributes (ie specific subdomains). The impact of various demographic and medical variables on HRQL was considered-including molecular subgroup. Results: The majority of patients reported having moderate or severe overall burden of morbidity for both the HUI2 and HUI3 (HUI2 = 60%; HUI3 = 72.1%) when proxy-assessed. Self-care in the HUI2 was rated as higher (ie better outcome) for patients from Western versus Eastern sites, P = .02. Patients with nonmetastatic status had higher values (ie better outcomes) for the HUI3 hearing, HUI3 pain, and HUI2 pain, all P < .05. Patients treated with a gross total resection also had better outcomes for the HUI3 hearing (P = .04). However, those who underwent a gross total resection reported having worse outcomes on the HUI3 vision (P = .02). No differences in HRQL were evident as a function of subgroup. Conclusions: By examining an international sample of survivors, we characterized the worldwide impact of medulloblastoma. This is a critical first step in developing global standards for evaluating long-term outcomes. K E Y W O R D S development, medulloblastoma, pediatric psychology, quality of life, survivors of childhood cancer Abbreviations: ε 2 , epsilon-squared; SD, standard deviation. *Indicates a statistically significant difference (P ≤ .05).

Can We Compare the Health-Related Quality of Life of Childhood Cancer Survivors Following Photon and Proton Radiation Therapy? A Systematic Review

“…A total of 14 studies are cross-sectional, 15 studies are longitudinal, and 1 study uses both longitudinal and cross-sectional data collection. Articles are included from the United States [ 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 ], Switzerland [ 30 , 31 , 32 , 33 ], South Korea [ 34 , 35 ], Canada [ 36 , 37 ], Japan [ 38 , 39 ], Netherlands [ 40 , 41 ], India [ 42 ], United Kingdom [ 43 , 44 ], Germany [ 45 ], Brazil [ 46 ], Italy [ 47 ], Poland [ 48 ], North American collaboration [ 49 ], European collaboration, [ 50 ] and an international collaborative [ 51 ].…”

“…A total of 11 studies analyse individual diagnoses, whilst 12 combine several different CNS diagnoses within their analyses. Eight studies analyse the HRQoL in patients diagnosed with a tumour of the brainstem or cerebellum (including medulloblastoma [ 22 , 43 , 47 , 50 , 51 ], diffuse intrinsic pontine glioma [ 28 , 40 ], or atypical teratoid rhabdoid tumour [ 32 ]. Kamran et al (2018) describe self-reported increases in HRQoL annually for a median of 5 years post-PRT [ 22 ], whilst Veldhuijzen van Zanten et al (2017) survivors self-reported worsening in nausea and fear of procedures at 3 months post-XRT [ 40 ].…”

Biological Role of MYCN in Medulloblastoma: Novel Therapeutic Opportunities and Challenges Ahead

“…This improvement was led through continuous progression in understanding the biological mechanisms behind this cancer and strengthened by emerging technologies and treatments. Although this OS sounds very positive, the reality of the age of these patients, coupled with the harsh quality of life (QOL) observed after the treatments ( 84 , 85 ) pushes this scientific field to develop more novel and targeted therapies which can ameliorate the dismal QOL.…”

A Holistic Review on the Current and Future Status of Biology-Driven and Broad-Spectrum Therapeutic Options for Medulloblastoma

“…Pediatric populations diagnosed with medulloblastomas comprise 15%-20% of all brain tumors [ 2 ]. Unfortunately, the quality of life for many of these children severely deteriorates despite high survival rates with aggressive chemotherapy, radiotherapy, and neurosurgery [ 3 ]. Due to the prevalence of medulloblastomas situated in the posterior fossa, they often rapidly metastasize into the cerebrospinal fluid and affect different parts of the brain, aside from the infratentorial region [ 4 ].…”