Abstract
Purpose
Young adult survivors of childhood cancer (YASCC) are an ever-growing cohort of survivors due to increasing advances in technology.
Today, there is a shift of focus to not just ensuring survivorship but also the quality of survivorship, which can be assessed
with standardized instruments. The majority of standardized health related quality of life (HRQoL) instruments, however, are
non-specific to this age group and the unique late effects within YASCC populations. The purpose of this study was to investigate
the relevance and accuracy of standardized HRQoL instruments used with YASCC.
Today, there is a shift of focus to not just ensuring survivorship but also the quality of survivorship, which can be assessed
with standardized instruments. The majority of standardized health related quality of life (HRQoL) instruments, however, are
non-specific to this age group and the unique late effects within YASCC populations. The purpose of this study was to investigate
the relevance and accuracy of standardized HRQoL instruments used with YASCC.
Methods
In a previous study, HRQoL items from several instruments (SF-36, QLACS, QLS-CS) were examined for relevance with a population
of YASCC. Participants (n = 30) from this study were recruited for a follow-up qualitative interview to expand on their perceptions of missing content
from existing instruments.
of YASCC. Participants (n = 30) from this study were recruited for a follow-up qualitative interview to expand on their perceptions of missing content
from existing instruments.
Conclusions
Existing HRQoL instruments do not take into account the progression and interdependence of emotional development impacted
by a cancer diagnosis. The themes derived from our qualitative interviews may serve as a foundation for the generation of
new items in future HRQoL instruments for YASCC populations. Further testing is required to examine the prevalence, frequency,
and breadth of these items in a larger sample.
by a cancer diagnosis. The themes derived from our qualitative interviews may serve as a foundation for the generation of
new items in future HRQoL instruments for YASCC populations. Further testing is required to examine the prevalence, frequency,
and breadth of these items in a larger sample.
- Content Type Journal Article
- Pages 1-8
- DOI 10.1007/s11136-012-0120-z
- Authors
- Gwendolyn P. Quinn, Health Outcomes and Behavior, H. Lee Moffitt Cancer Center and Research Institute, 12902 Magnolia Drive, MRC CANCONT, Tampa, FL 33612, USA
- I-Chan Huang, Health Outcomes and Policy, College of Medicine, University of Florida, Gainesville, FL, USA
- Devin Murphy, Jonathan Jaques Children’s Cancer Center, Miller Children’s Hospital, Long Beach, CA, USA
- Katie Zidonik-Eddelton, Health Outcomes and Policy, College of Medicine, University of Florida, Gainesville, FL, USA
- Kevin R. Krull, Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, Memphis, TN, USA
- Journal Quality of Life Research
- Online ISSN 1573-2649
- Print ISSN 0962-9343