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

Autor: Cynthia B. deMedeiros, Iska Moxon‐Emre, Nadia Scantlebury, David Malkin, Vijay Ramaswamy, Alexandra Decker, Nicole Law, Toshihiro Kumabe, Jeffrey Leonard, Josh Rubin, Shin Jung, Seung‐Ki Kim, Nalin Gupta, William Weiss, Claudia C. Faria, Rajeev Vibhakar, Lucie Lafay‐Cousin, Jennifer Chan, Johan M. Kros, Laura Janzen, Michael D. Taylor, Eric Bouffet, Donald J. Mabbott
Jazyk: angličtina
Rok vydání: 2020
Předmět:
Zdroj: Cancer Medicine, Vol 9, Iss 2, Pp 447-459 (2020)
Druh dokumentu: article
ISSN: 2045-7634
DOI: 10.1002/cam4.2701
Popis: 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 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
Databáze: Directory of Open Access Journals
Nepřihlášeným uživatelům se plný text nezobrazuje