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 and realizing the benefits of modern treatments. We evaluated HRQL in an international cohort of pediatric medulloblastoma pa...
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Wiley
2020-01-01
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| Series: | Cancer Medicine |
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| Online Access: | https://doi.org/10.1002/cam4.2701 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Cynthia B. deMedeiros |
| collection | DOAJ |
| description | 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 < .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. |
| format | Article |
| id | doaj-art-d8e33d8b17a543f29c90497a4da7b332 |
| institution | Kabale University |
| issn | 2045-7634 |
| language | English |
| publishDate | 2020-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Cancer Medicine |
| spelling | doaj-art-d8e33d8b17a543f29c90497a4da7b3322025-08-25T10:14:04ZengWileyCancer Medicine2045-76342020-01-019244745910.1002/cam4.2701Medulloblastoma has a global impact on health related quality of life: Findings from an international cohortCynthia B. deMedeiros0Iska Moxon‐Emre1Nadia Scantlebury2David Malkin3Vijay Ramaswamy4Alexandra Decker5Nicole Law6Toshihiro Kumabe7Jeffrey Leonard8Josh Rubin9Shin Jung10Seung‐Ki Kim11Nalin Gupta12William Weiss13Claudia C. Faria14Rajeev Vibhakar15Lucie Lafay‐Cousin16Jennifer Chan17Johan M. Kros18Laura Janzen19Michael D. Taylor20Eric Bouffet21Donald J. Mabbott22Department of Psychology The Hospital for Sick Children Toronto ON CanadaDepartment of Psychology The Hospital for Sick Children Toronto ON CanadaNeurosciences and Mental Health The Hospital for Sick Children Toronto ON CanadaDepartment of Hematology/Oncology The Hospital for Sick Children Toronto ON CanadaDepartment of Hematology/Oncology The Hospital for Sick Children Toronto ON CanadaNeurosciences and Mental Health The Hospital for Sick Children Toronto ON CanadaDepartment of Psychology The Hospital for Sick Children Toronto ON CanadaTohoku University Graduate School of Medicine Sendai JapanNationwide Children's Hospital Columbus OH USASt. Louis Children's Hospital St. Louis MO USAChonnam National University Hwasun‐gun KoreaSeoul National University Hospital Seoul KoreaUniversity of California San Francisco San Francisco CA USAUniversity of California San Francisco San Francisco CA USAHospital de Santa Maria Centro Hospitalar Lisboa Norte Lisbon PortugalUniversity of Colorado Denver Aurora CO USAAlberta Children's Hospital Calgary AB CanadaAlberta Children's Hospital Calgary AB CanadaErasmus Medical Center Rotterdam The NetherlandsDepartment of Psychology The Hospital for Sick Children Toronto ON CanadaDevelopmental and Stem Cell Biology Program The Hospital for Sick Children Toronto ON CanadaDepartment of Hematology/Oncology The Hospital for Sick Children Toronto ON CanadaDepartment of Psychology The Hospital for Sick Children Toronto ON CanadaAbstract 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 < .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.https://doi.org/10.1002/cam4.2701developmentmedulloblastomapediatric psychologyquality of lifesurvivors of childhood cancer |
| spellingShingle | 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 Medulloblastoma has a global impact on health related quality of life: Findings from an international cohort Cancer Medicine development medulloblastoma pediatric psychology quality of life survivors of childhood cancer |
| title | Medulloblastoma has a global impact on health related quality of life: Findings from an international cohort |
| title_full | Medulloblastoma has a global impact on health related quality of life: Findings from an international cohort |
| title_fullStr | Medulloblastoma has a global impact on health related quality of life: Findings from an international cohort |
| title_full_unstemmed | Medulloblastoma has a global impact on health related quality of life: Findings from an international cohort |
| title_short | Medulloblastoma has a global impact on health related quality of life: Findings from an international cohort |
| title_sort | medulloblastoma has a global impact on health related quality of life findings from an international cohort |
| topic | development medulloblastoma pediatric psychology quality of life survivors of childhood cancer |
| url | https://doi.org/10.1002/cam4.2701 |
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