The development of a health-related quality of life assessment tool for adolescent and young adult survivors of central nervous system tumors

Abstract

Central 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]