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dc.contributor.authorWong, Aliciaen_US
dc.date.accessioned2015-08-05T04:27:35Z
dc.date.available2015-08-05T04:27:35Z
dc.date.issued2012
dc.date.submitted2012
dc.identifier.other(ALMA)contemp
dc.identifier.urihttps://hdl.handle.net/2144/12679
dc.descriptionThesis (M.A.)--Boston Universityen_US
dc.description.abstractCentral nervous system (CNS) tumors are the most common form of solid tumor in children and young adults. Medical advancements have increased survival rates dramatically for people diagnosed with CNS tumors, but long-term disease-and treatment-related sequelae remain significant issues for survivors. The chronic health conditions and vulnerability to late effects that this population of survivors experiences are different from that of survivors of other forms of cancer due to the nature and location of CNS tumors. Health-related quality oflife (HRQoL) measurement has become a useful and significant tool for tracking the progress and well-being of patients long-term. This paper examines HRQoL specifically for adolescents and young adults (AYA) who are CNS tumor survivors, and describes the findings of a research study conducted to develop the Health Related Quality of Life Evaluation in Survivorship of CNS Tumors (QUEST CNS) instrument. METHODS: Five focus groups were conducted with 19 AYA survivors of CNS tumors in November and December 2010. Transcripts were coded and analyzed to identify the major domains of HRQoL to be included in the QUEST CNS instrument being developed. Separately, a review of existing HRQoL instruments was conducted to identify major domains in the literature and these instruments. 324 potential items were generated from the focus group findings and instrument review, and the list was electronically rated by a group of 8 experts in the fields of psychology, oncology, and hematology. Content validity ratios were determined for each item, and the list of items was amended accordingly. 165 items were removed, leaving 159 items for the preliminary QUEST CNS instrument. [TRUNCATED]en_US
dc.language.isoen_US
dc.publisherBoston Universityen_US
dc.rightsThis work is being made available in OpenBU by permission of its author, and is available for research purposes only. All rights are reserved to the author.en_US
dc.titleThe development of a health-related quality of life assessment tool for adolescent and young adult survivors of central nervous system tumorsen_US
dc.typeThesis/Dissertationen_US
etd.degree.nameMaster of Artsen_US
etd.degree.levelmastersen_US
etd.degree.disciplineMedical Sciencesen_US
etd.degree.grantorBoston Universityen_US


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