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.
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.
Results
Respondents reported missing, relevant content among all three of the HRQoL instruments. Results identified three content areas of missing information: (1) Perceived sense of self, (2) Relationships, and (3) Parenthood.
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.
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Abbreviations
- YASCC:
-
Young adult survivors of childhood cancer
- HRQoL:
-
Health-related quality of life
- PTSD:
-
Post-traumatic stress disorder
- SF-36:
-
Medical Outcomes Study Short Form-36
- QOL-CS:
-
Quality of Life—Cancer Survivors
- QLACS:
-
Quality of Life in Adult Cancer Survivors
- MOS-24:
-
Medical Outcome Study Scale
- MCSCS:
-
Crown Social Desirability Scale
- UF:
-
University of Florida
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Acknowledgments
Funding for this project was provided by NIH/NICHD K23 HD057146-03 and Moffitt/UF/Shands HealthCare Consortium Joint Cancer Center Pilot Fund UF80052.
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Quinn, G.P., Huang, IC., Murphy, D. et al. Missing content from health-related quality of life instruments: interviews with young adult survivors of childhood cancer. Qual Life Res 22, 111–118 (2013). https://doi.org/10.1007/s11136-012-0120-z
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DOI: https://doi.org/10.1007/s11136-012-0120-z