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Using three legacy measures to develop a health-related quality of life tool for young adult survivors of childhood cancer

Abstract

Background  

Little attention has been paid to selecting and developing health-related quality of life (HRQOL) measurement tools for young
adult survivors of childhood cancer (YASCC). The primary purpose of this study was to develop a HRQOL tool for YASCC based
on three legacy instruments.

Methods  

Data collected from 151 YASCC were analyzed. HRQOL was measured using the Medical Outcomes Study SF-36, Quality of Life in
Adult Cancer Survivors, and Quality of Life-Cancer Survivor. We used the following stages to develop our HRQOL tool: mapping
items from three instruments into a common HRQOL construct, checking dimensionality using confirmatory factor analyses (CFA),
and equating items using Rasch modeling.

Results  

We assigned 123 items to a HRQOL construct comprised of six generic and eight survivor-specific domains. CFA retained 107
items that meet the assumptions of unidimensionality and local independence. Rasch analysis retained 68 items that satisfied
the indices of information-weighted/outlier-sensitive fit statistic mean square. However, items in most domains possess relatively
easy measurement properties, whereas YASCC’s underlying HRQOL was on the middle to higher levels.

Conclusions  

Psychometric properties of the established tool for measuring HRQOL of YASCC were not satisfied. Future studies need to refine
this tool, especially adding more challenging items.

  • Content Type Journal Article
  • Pages 1-14
  • DOI 10.1007/s11136-011-0055-9
  • Authors
    • I-Chan Huang, Department of Health Outcomes and Policy, College of Medicine, University of Florida, Gainesville, FL, USA
    • Gwendolyn P. Quinn, Department of Oncologic Sciences, College of Medicine, University of South Florida, Tampa, FL, USA
    • Pey-Shan Wen, Institute for Child Health Policy, College of Medicine, University of Florida, PO Box 100177, Gainesville, FL 32610, USA
    • Elizabeth A. Shenkman, Department of Health Outcomes and Policy, College of Medicine, University of Florida, Gainesville, FL, USA
    • Dennis A. Revicki, Center for Health Outcomes Research, United BioSource Corporation, Medford, MA, USA
    • Kevin Krull, Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, Memphis, TN, USA
    • Zhushan Li, Department of Educational Research, Measurement, and Evaluation, Lynch School of Education, Boston College, Chestnut Hill, MA, USA
    • Patricia D. Shearer, Division of Pediatric Hematology/Oncology, Department of Pediatrics, School of Medicine, University of Maryland, Baltimore, MD, USA